I said take a seat

So it turns out that I’m a bit of a hypocrite. I wasn’t always. But somewhere along the way I’ve become one when it comes to feelings. Specifically when it comes to feeling my feelings.

I’m a big supporter of feeling your feelings. As opposed to ignoring them, I mean. You have to really feel your feelings before you can rally and carry on. I’m also a big supporter of rallying, but not before the feelings have all been felt. I wrote a post about this back in…2017? Care, Feel, Rally, Repeat. I wrote it in part for me, but really I wrote it for some people in my life who were going through some hard stuff that involved lots of caring and feeling and rallying. But in the year that followed it became my own mantra because I did lots of caring and feeling and had to do lots of rallying. Care, feel, rally and repeat. In that order. I’m also a big supporter of doing things in the correct order.

Anyway somewhere along the way in the last little while I’ve become a bit of a care, feel, rally, repeat drop-out because I’m not doing the best job at feeling my feelings.

I have a lot of big feelings about a lot of big things right now.

I should note that I started writing this post a couple of weeks ago, before the global COVID-19 pandemic. As I’m sure you can imagine, on top of all the other big feelings, I also have some pretty big feelings about this current situation. Giant ones, actually. And maybe I’ll share more about that in more detail another day.

But not today. Today is about feelings in general.

I realized recently that a lot of the time when I share how I’m feeling about something I follow it up with a shrug. Two kinds of shrugs, actually. There’s a verbal shrug that comes in the form of, “oh well…it’s okay…it’s just the way it is…,” or something along those lines. And then I either scrunch up my face a little bit or tighten the corners of my lips and actually shrug my shoulders. And then I change the topic of conversation. A lot of the time I end up avoiding sharing how I’m feeling at all.

I do it mostly for other people. We as humans don’t like to see other humans struggling, and we don’t often know what to do about it. So when I see that someone is struggling with watching me struggle with something I quickly put an end to that. Part of that is just who I am, because I’m oversensitive to the way that other people feel and I don’t want anyone to feel sad or bad because of me. But part of it is conditioning. Without even realizing, a lot of us put pressure on other people to make us feel better about what’s happening to them, and so I’ve spent a lot of the last ten years trying to make other people feel better about my situation, reassuring them about things that I am not very sure of myself.

It ends up coming across as accepting.

Everyone always thinks I’m just so accepting. They praise me for it. Which I never know what to do with besides more face scrunching and shoulder shrugging because what other choice do I have but to be accepting?

And don’t get me wrong, I am very accepting. And that acceptance is hard-earned. It did not come pre-programmed into me, rather I had to wire it in myself, parallel to the hard-earned wisdom. And on the one hand, it’s true that I don’t really have much choice but to be accepting, because what is my other option? Denial? Misery? How does that help me?

But on the other hand, accepting doesn’t mean that there isn’t also room for feeling the feelings.

And that’s what I realize I haven’t been doing a very good job of. Because my tendency to shrug off my feelings with other people has translated to shrugging off my feelings with myself. And without actually feeling my feelings, my efforts at rallying are not always the most successful.

In order to feel your feelings, you have to sit with them a while. Instead, I’m doing this awkward thing where I sit down for a second and then the chair is not very comfortable so I quickly stand back up again. Or I worry that maybe that wasn’t my seat to sit in and maybe I’ve sat in someone else’s seat so I don’t stay seated just in case. Or I sit down and look around and no one else it sitting down so I mustn’t stay seated in case that comes across as rude.

Or maybe I’m just losing miserably at a game of musical chairs.

The point is that I’m standing near my feelings, but not actually sitting with them. And you all know how good I am at standing…not.

But since I said that I was going to spend this year taking a seat, it’s only fair that I sit with my feelings, too. Actually feel those feelings. But still be accepting. Because they’re not mutually exclusive. Because there’s room for both. Because it’s okay not to be okay with something but to be okay with it not being okay. Because I don’t have a responsibility to anyone to be okay with something. Because I don’t owe anyone a face scrunch and a shrug. Because I owe it to myself to stop shrugging.

Because I care about so many things and I want to keep rallying. And in order to rally properly I need to sit with my feelings first, so that when I get up to rally I’m actually ready to do so.

And anyway I just wanted to actually finish up these thoughts to share with you because these are uncertain times and uncertain times bring with them lots of feelings and I want you to know that it’s okay to sit with them, to really feel them. We’re all feeling them. It’s okay to not always feel okay right now.

And even though it’s not okay right now to actually be together face to face because of the whole pandemic-necessitated-social-distancing thing, we can still sit with each other while we sit with our feelings.

And feel them. And share them.

I’ll save you a seat.

Take a seat

Hello! Happy New Year! And while I’m at it, Happy Valentine’s Day, too! Because it’s February now. The middle of February.

But I’m actually here to tell you about something that happened last year. But I’m going to start with something that happened even before that.

So. I came home on parenteral nutrition (TPN…IV nutrition…it’s all the same thing) in November of 2014.

Two things about TPN: one, it requires a significant amount of medical supplies and two, it requires a significant amount of daily set-up. When I first came home I had no real concept of what this would all entail and how I would make it work, and so my storage and set-up location have evolved since then.

But one thing that never changed is that I always stood up while doing my TPN set-up.

Now, you might be thinking that this doesn’t sound like a very good situation, because if you know me at all you probably know that I’m not very good at standing up. While years and years of ballet (and now lots of hard work in physiotherapy) has given me excellent balance, years of neuro-autoimmune activity has made it so the rest of my body just can’t deal. Being upright on my feet for too long, particularly standing still in one spot, makes me feel all kinds of terrible. Add in the lifting of heavy TPN bags, bending over to dispose of sharps and crouching down and standing back up to situate everything in my backpack…my body hated the TPN set-up process.

As a result, I hated it, too. I dreaded it every single day. From the moment I disconnected from my infusion in the morning, I would start counting down with dread the hours until I had to set it back up again. I never had a consistent schedule because I would need to wait until I felt well enough to stand up long enough to get it set up. Sometimes this wouldn’t happen until after midnight which meant that the following day my infusion wouldn’t finish until well into the afternoon, which just shortened the hours until I was supposed to do it again.

Hating the set-up process made me hate just the whole TPN deal.

And yet, it never really occurred to me to do it differently.

Until last summer. I was at someone else’s house and I went to set up my TPN and instead of the standing-height dresser full of medical supplies that I usually used, there was a desk with a chair. And so I sat down and I set up my TPN.

And it was magical.

I didn’t feel terrible and tired after. I didn’t feel like I had to rush my way through it. It was such a simple thing but it was a total game changer. So I went home and I ordered a small desk-like table thing and I got a chair and now I sit down to set up all of my infusions and guess what?

I don’t hate them anymore.

I don’t spend my entire day dreading the set-up. I am able to take my time. It’s less stressful. I think more clearly when I’m sitting down. I’m almost always able to start my infusions when I actually intend to, which means they finish earlier in the morning and take over less of my day…yes it’s still the same number of hours but freedom in the day is more important to me than freedom in the evening.

It seems like such a small change but it’s made such a big difference. I had no idea how much of my burnout had to do with how my set-up process just wasn’t working for me. My overall feelings towards my infusions have improved. A lot.

All because after almost five years of being on my feet, I took a seat.

For most people it works the opposite way. We often hear things like “stand up and take a look around” or “thinking on your feet” but I do my best looking around on my butt, thank you very much, because when I’m standing up the only looking around I’m doing is for a place to sit down. And I am in fact physiologically incapable of thinking well on my feet.

Life is so much more accessible to me when I’m sitting down.

And so my word of the year this year is not a word but a phrase and that phrase is “take a seat.”

Take a seat, literally. Because any time I think it will be easier to just stand up and do something…I’m probably wrong. It will probably be easier and more enjoyable to sit down. Just because I can stand for something, doesn’t mean I need to. Stand up if I want to, but not because I feel like I’m supposed to. Save the standing for when it’s important to me.

And take a seat, figuratively. Because how many other things am I doing a certain way because it’s never occurred to me to do them differently, even though a different way might be a better way? Also take a seat for important people in my life, because if I’m going to be there for them, they deserve a non-rushed, clear-thinking version of me.

And perhaps the most intimidating part of this all, asking for a seat. Because you can’t take a seat if there’s no seat available. I can’t expect anyone to know what I need if I’m too afraid to ask for what I need, if I’m too worried about being a bother.

So I’ll just be sitting here for the rest of the year.

And I’ll save you a seat in case you want to sit down, too.




Acceptance with a twist(er)

I’ve been sick for a pretty long time now. Ten years, to be exact. Well actually, if we’re being exactly exact, then it’s ten years, two months and five days.

That anniversary used to be a bigger deal to me than it is now. I expected the ten-year anniversary of getting sick to feel like this big heavy thing, but to be honest it really wasn’t a huge deal. I didn’t even feel the need to write about it!

If I hadn’t gotten sick ten years ago, would I have ended up sick eventually? Would some other combination of environmental factors have combined with my genetics and turned my immune system against me? Maybe. Probably. To some degree, at least. Would my life have turned out this way anyway? I’ll never know, and it doesn’t feel productive to spend too much time wondering.

Because I did end up sick and my life did turn out this way.

It used to be that every year when that anniversary came around, I would think wow I can’t believe it’s been three…five…eight years and I’m STILL sick.

But now? Now I’m at a place where I just think well of course I’m still sick. This is what my life is. An existence built around illness is really the only existence I’m familiar with anymore. It’s certainly the only adult existence I have ever known. And I mean that in a matter of fact way, not a woe-is-me way. It just is what it is. It’s ten years later and we’re here and we’re doing this and it’s okay.


Ten years to the day of being sick felt like acceptance.


A few weeks later it was November and people started talking and sharing posts about how there were only two months left in the decade. Which is when it hit me that I will have been sick for the entire decade.

Did anyone see where I put that acceptance I was just talking about? Because I can’t seem to find it anymore.

Being sick for ten years is okay, but losing an entire decade to illness? Not okay! Not fair! I guess when I think of being sick for ten years, it feels more open-ended? I’m still doing it. But when I think about having been sick for the entire decade, that feels finished. It’s closed off. Over and done with. It’s just gone.

An entire decade, gone. Where would I find myself at the end of this decade if I had never gotten sick?

Just like before, I’ll never know. I can imagine where I would be in life, but I don’t know. How could I know? How could anyone a decade ago have known where they would be today? And how can anyone today know where they will be at the end of the next decade? A decade is a radically transformative amount of time.

But it’s also just that. A unit of time. A period of ten years.

On October 11, 2019, I had been sick for a period of ten years. An entire decade. And every day since then, I have been sick for an entire decade. More than that. A decade plus two months and five days, now. And I’m okay with it.

Still not really okay with this whole being sick for the entire 2010’s business, though. And if you are wondering why I can accept one and not the other, even though they are essentially the same thing, well, I have no good answer for you.

And that’s okay. Because one of the biggest lessons this decade of being sick has taught me has been about acceptance, that acceptance is neither all or nothing, nor is it an endpoint.

We hear about the stages of grief and we think that once we’ve reached acceptance then that’s it. We’re done. We did it. We’ve grieved. Next.

Yeah, no. In my experience, that’s really not how it works.


It’s more like a game of Twister, where acceptance is the red circle you’ve got your left hand on but your other limbs are tangled up elsewhere. Then life calls out “left foot red” and then “right hand blue” and just when you are ready for a “right foot blue” and for your life to be solidly and steadily squared up on one corner of the mat, life goes and calls out “right foot green” and ruins it all. Not just any green circle, by the way, the green circle in the opposite corner from where you are building your foundation. Because when life is in control of the game of Twister spinner, it gets to pick not just the colour but the exact circle.

Time passes, life changes, and after a while you have an entirely different perspective; now acceptance feels like the yellow circle your right hand is on. That’s when, of course, life calls out “right hand purple” even though there aren’t any purple circles.

Basically anytime you’ve found a place of acceptance you can be sure that in time life will be there, spinner in hand, ready to shake things up.

It’s not a perfect metaphor.

Really though, what’s what acceptance feels like. It’s there, and then it’s not. You’re there, and then you’re not. You can accept “ten years” but you can’t accept “the entire decade.” Your right hand is on red but your left is on green, you’re still thinking about that blue circle you couldn’t reach a few spins ago, and all the while you’re trying to find orange.

You can accept that acceptance is not an endpoint, and then you can’t understand why you can’t just be done having to accept the same thing over and over again.

Acceptance. It is not all or nothing and it’s not forever. We can’t expect that from ourselves and just as importantly, we can’t expect that from each other. It’s also not a logical thing. It doesn’t follow a standard timeline. It looks different from one person to another. And a lot of the time it comes down to a spinner we have no control over.

So I guess that where I am after a decade, two months and five days of being sick is hand over hand under foot, tired from a long game of Twister that I never wanted to play in the first place. But trying to enjoy it as much as I can all the same.

It’s ten years later and we’re just here and we’re doing this and it’s (mostly) okay.