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.

Acceptance.

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

Until.

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.

Twister

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.

That B word…Birthday? Better? Blood?…It’s Blood. And P.S. Plasma, too

It’s my birthday this month. I’m turning 28.

I don’t really like my birthday. It’s like oh look time keeps passing and you’re still sick and your life still doesn’t look anything like you hoped it would and also you’re older so now it just stings more that you don’t have any of those things you want in life…but yay happy birthday.

One year older, still sick, and usually sicker than the year before.

But this year is a little different.

Don’t get me wrong, I’m still not stoked about the getting older thing. I’m trying to be more like my brother in this area. My brother is the most laidback person I know, which is either wonderfully refreshing or terribly exasperating, depending on my mood. He turned 30 this year and when you ask him how he felt about it he just shrugs. The other day I was telling him that I wasn’t feeling thrilled about turning 28 when he sagely asked me how I felt about turning 27, 7 months, and 3 days. I of course said I didn’t care about that and he then asked why 28 was any different.

Well, fine, big brother, be all annoyingly chill about everything why don’t you and I’ll just stay here and have this existential crisis on my own.

Okay but as I was saying this year is a little different. I’m still sick, but, I’m not sicker than last year. Not only that but I’m actually better than last year.

I am always so hesitant to use that B word because it’s like a starting pistol in the race of jumping to conclusions. You say “better” and people hear “all better.” They assume better-the-end-point as opposed to better-that-relative-place-that-is-anything-but-a-fixed-point. Illness and better are two concepts that are so congruent in our minds that it can be hard for people to wrap their heads around the idea of being better than before but also still being really sick.

But with that disclaimer in mind, yes, I am turning 28 better than I was when I turned 27. And for the first time in I-don’t-know-how-many years, I’m not just hopeful that I will be able to say the same thing when I turn 29, but I actually see it as a realistic possibility.

Although there are a lot of different elements at play here, I owe part of this improvement to one specific treatment, and so I actually owe it to all of the blood and plasma donors out there.

I know I haven’t shared many health specifics here in recent years, but we have figured out that I have an autoimmune disease, and for the last year, on and off, I have been receiving a treatment called intravenous immunoglobulin (IVIG), which is a blood plasma product made from pooling the antibodies of blood and plasma donors.

When you donate blood, your donation is separated into red blood cells, platelets, and plasma. Plasma is the liquid part of the blood that contains all the proteins, including antibodies. Some of that plasma is used directly for plasma transfusions, and some of it is manufactured into immune globulin products for IV or subcutaneous use. Plasma can actually be donated on its own and more frequently than whole blood donations can be made. If you live in the U.S. you can even be paid for your plasma.

e602afd2-49a7-458e-9e30-186e0c0fad35I don’t know exactly how IVIG works when it comes to autoimmune diseases, because medicine doesn’t even know, but it somehow stops my immune system from attacking cells in my body that it shouldn’t be attacking. It’s not a cure, rather an ongoing treatment, and not an easy one, at that. The side effects are sometimes as bad as, and at times even worse than the symptoms we’re treating. 

But as a result, for the first time in close to ten years, my overall quality of life is improving instead of worsening.

I am so grateful I don’t even know how to put it in words.

I am also terrified. Because there is a global IVIG shortage right now. Because demand is outpacing supply. Because every day I go online and see another person talking about how their treatment has been cancelled. Because I don’t know if one day that will be me. Because the last time we stopped my IVIG I lost all of the progress I had started to make. Because I don’t want to go back to where I started. Because even though my everything now is not at all what it used to be, I don’t know how I will get through losing everything. Again.

I hate that there’s nothing I can do about it. Because the only way to increase supply of IVIG is to increase blood and plasma donations.

And I can’t donate blood.

I always wanted to. I signed up to donate during my first semester at university, but that is the semester I got sick and never got better. That is when, unbeknownst to me for more than nine years, I developed the autoimmune disease I’m receiving IVIG for today.

And just as I hate that there’s nothing I can do about it, I also hate asking for help.

Yet here I am, asking, because I can’t donate blood or plasma.

But maybe you can.

Before you feel the need to justify to me why you can’t be a blood donor, please please please, you don’t need to! I’ve spent the last decade woefully saying, “I would if I could but I can’t!” every time I hear or see a commercial calling for blood donations, feeling the need to explain myself anytime anyone shares a post about it. I know there are so many reasons, including reasons beyond just strict ineligibility, that keep people from donating. You do not owe me an explanation.

However, if you’ve ever wanted to be a donor…have ever thought about being a donor…are a registered donor who has been meaning to make another donation…or are right now considering it for the first time, I encourage you to please take some action! Even if taking action means just starting by learning more on the Canadian Blood Services website. (I don’t know how it all works in any other country but I am confident that Google can help you!).

And if you already are a donor, please know how grateful I am to you. I am grateful to you every time I get to eat a little bit of something new, even if I feel sick afterward. I am grateful to you every time I get to delight in playing with my nephew, even if I am too tired to move for the rest of the day. I am grateful to you that when I turn 28 this month I will have something I actually want to celebrate.

I am still sick and I am still in pain, but in my spirit I feel more like myself than I’ve felt in a really long time, which is a kind of healing all on its own. And for that I am so grateful.

To past, present and future donors, all I can say is thank you.

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