Saying things

Hi friends! Happy spring! Welcome to April. I guess we’re more than halfway through April now, but when I first started writing this it was still March, and apparently I unrealistically expected to publish this early in April.

Sorry for the radio silence around here. I don’t even know what that means, radio silence. It’s an expression, but radios aren’t silent so where did it even come from?

Okay. I looked it up. Literally it is absence of radio transmission. As an expression, it’s a period during which you don’t hear anything from a normally talkative or communicative person or group. So it’s true, radios aren’t normally silent. That’s the point.

Alright. So sorry for the radio silence around here. Although am I still a “normally communicative” blogger when last year I only published six posts? My frequency of posts has definitely decreased since the first few years of this blog. I don’t really know why quite honestly. I think mostly life has just gotten messier. I blog a lot in my head, and I start writing a lot of posts, but it feels harder to put together a coherent summary of things than it used to. Maybe I just have less energy than I used to.

I definitely have less energy than I used to.

And then like, do people even blog anymore? Do people still read blogs? A lot of people seem to “micro-blog” on Instagram but I don’t want my personal Instagram to be public. And I don’t want to have two sort of personal Instagram accounts.

I don’t know. I have things I want to say still and I still want to connect with the people who relate to the things that I want to say but I guess even when I do know how to say what I want to say I don’t know where to say it so then I just don’t say it.

But I’ve been reminded on a few occasions recently that saying things can be important.

Two friends this year, while telling me about challenging situations they were going through, have told me, “but I could hear your voice in my head saying…” followed by something I’d said to them at some point in time over the years. It’s a cool thing, knowing that even when you’re not with someone, you can still be there with them, simply because of words you shared with them in the past.

And then. I was tagged in a comment on Instagram, on a post of someone I didn’t know. This person was about to undergo a procedure they were nervous about, and my friend Lindsay was sharing words I had shared with her before she had undergone a major “this might help but it might not but even if it helps it’s still going to be far from perfect” surgery.

But it wasn’t just that Lindsay had remembered what I had told her. I learned that she had actually written what I had said down on a piece of paper and looked at it all the time before her surgery. Learning that really touched me. It actually made me tear up a little bit. My words had helped her, been there for her, encouraged her through a scary decision.

Words. They matter. They have power. And yes of course, as with any form of power, words can hurt. But words can also help. Words can heal. Words can connect.

Words matter. Saying things matters. And Lindsay reminded me of that.

I want to start saying things again. I want to keep saying things. No, I’m not exactly sure where and when and to whom and how much; these are things I’ve been thinking about a lot over the last few months, and I still need to do some more figuring out. But what I have figured out is that I do want to keep saying things.

And so. I’m going to start right now and say some things right here. In fact, I’m going to say what I said to my friend before her surgery, that she then told her friend. It’s what I’ve said to other friends before big decisions. The reason I started saying it to anyone at all is because it’s something I’ve said to myself on more than one occasion. Here it is:

It’s always going to be hard. But maybe it doesn’t need to be this hard. And you’re worth that chance.

We’ve all got our problems. Like our big problems, not our “my hair straightener stopped working” or “the grocery store didn’t have the cereal I wanted” problems. I’m talking the big, life altering problems. We’ve all got them.

It’s really easy to get stuck in one of these problems. Life hands you something you don’t want to deal with but you have no choice so you just learn to live with it. You deal. And when over time the problem gets worse and worse you just keep dealing.

And sure, sometimes possible solutions come along, but all the solutions are accompanied by their own potential problems. And you’ve been dealing with this problem so long that you don’t even remember what life was like outside of it. Plus, you’re used to this problem and surely that’s easier than adjusting to the new problems that could come along with the solutions.

We get stuck. And we let ourselves just be stuck sometimes because getting unstuck is scary and unknown and overwhelming. And hard work. And because we minimize just how hard things are, just how hard the work already is. And, because we invalidate our big problem by comparing them to the big problems that other people are dealing with.

Life is just hard sometimes. We all know that.

But what if it doesn’t need to be this hard? What if there’s an easier way? What if in and amongst the unknown and overwhelming is a chance for a life that ends up being a little less hard?

A chance.

I just wanted to come here and say that you are worth that chance. There are many reasons not to take that chance, many valid reasons, just please do not let your perceived self-worth be one of them. And do not use someone else’s big problem to trivialize your own. When there is a chance, you are worthy of it.  

So yeah. Those are the things that I came here to say to you today.

Also hello, long time no see.

Hopefully see you for more saying things soon.

Okay now bye.

 

Happy Hopeful New Year

HOPE

Just over three months ago I wrote a post called Waking Up about how after months of living in a nightmare things were finally getting better. But then about two weeks later one of my doctors ended up stopping the treatment most responsible for that improvement to see what would happen without it. What happened is that it did not go well and I pretty much fell back into that nightmare.

It sucked. It sucks, actually. Because it still sucks. Because I’m still stuck in it. And we’re figuring it out but it takes time and work, and redoing work I already did. Which sucks.

Sigh.

I’m not ending this year the way I thought I would be, but it’s the end of the year nonetheless, which means it’s time for my end-of-the-year-thoughts blog post on this mostly-abanbdoned-throughout-2018 blog.

This year my end of year thoughts are a lot of what ifs.

What if my doctor hadn’t stopped my treatment? And what if it hadn’t taken three quarters of a year for that treatment to start in the first place? What if instead of assuming all my symptoms to be malnutrition for all those years doctors had believed me and recognized that something bigger was going on? How much nerve damage could have been prevented?

What if medicine knew nine years ago what it knows now? What if that doctor was right when she said that had I received the right treatment right away that I might be mostly healthy today? What if she’s right when she says it’s been too long and we might not be able to really help much?

And, shamefully, what if I lived somewhere else? What if I lived where I had access to the sub-specialists and the sub-sub-specialists and even the sub-sub-sub-specialists that just don’t even exist here, but that would know best how to help me?

It’s just been a hard year.

With unnecessary suffering. I’m pretty accepting of everything; I don’t think of myself as suffering every day. I’m coping. I’m managing. I’m doing my best. I’m living. And sometimes there is suffering and it’s just part of it all, but this year a lot of it was unnecessary, which is harder to accept.

So anyway.

That’s where I’m at on this last day of 2018. Some really positive end of the year thoughts, hey?

But I’m writing it all out so that I can let it all go.

Well, so that I can try, anyway. I’ve been carrying all that around in a bulky, awkwardly shaped, terribly heavy suitcase and I don’t need that kind of baggage in my life. So at the very least the process of writing it all out is akin to putting some wheels and a nice pull handle on that suitcase so it’s easier to cart around. It’s a start.

But really, there’s nothing I can do about any of those what ifs so what’s the point of being bitter about them? I can’t change the past. There’s nothing I can do about nine years ago. Or nine months. Or nine days. Or even yesterday. All I can do is try for a better tomorrow. Except not literally tomorrow because I’m pretty sick right now and that doesn’t change overnight. Probably not nine days from now either. Nine weeks…eh…but a better nine months from now? Very possible.

And as frustrated as I feel, as awkward as that suitcase of what ifs is, it’s not the only piece of luggage I’ve got with me. There are some other suitcases of blah. But then I have a backpack of gratitude, and I don’t mean the kind of backpack you use for school, I’m talking about one of those big backpacks you use to…to backpack around places. (A backpacking backpack? Evidently I’ve never backpacked anywhere.) I’ve also got a duffel bag full of things I’m looking forward to. As well as a backpack, but a regular one this time, of things I want to learn and try. A hat box containing my sense of humour (Why a hat box? Um, why not a hat box?) And three giant suitcases full of yarn. Obviously.

Metaphorical me is clearly very strong and coordinated, carrying around all that luggage, which is funny because real life me gets tired reaching for my phone and half the time ends up dropping it.

Just kidding. My imagination skills are not that strong so metaphorical me is kind of a disaster, too. But we, and by we I mean the real life and metaphorical versions of me, are lucky enough to have some pretty rad people in our lives. Metaphorically, they carry all my luggage around for me. And push me in my wheelchair through the airport. I’m not sure how we ended up in an airport but that’s where we are apparently. Maybe we’re going backpacking! Wow, metaphorical me is so adventurous.

As for real life me? Those pretty rad people help lighten the load of the bad stuff and make the good stuff more good. Whoops…better is actually the word I’m looking for. They make the good stuff better.

Okay so I didn’t really know where this post was going when I started it but I’m cool with where it’s ended up. But also that got kind of complicated so thanks for trudging through.

Anyway. My point is…I don’t even know anymore.

My point is that 2018 was not ideal. It really did not go very well for me. But I still have hope.

My point is that I’m still so hopeful. I don’t even know for or about what really, just that after all this time I still feel hopeful. Because after all this time I still choose to be hopeful.

I know that life doesn’t magically reset at the start of a new year, but I’m hopeful that in a year from now I’ll be writing about how 2019 was the year things finally changed for the better, remembering that better doesn’t always look the way we expect it to. And if not? Well then I’m hopeful I’ll be able to say the same thing again a year from now.

So yeah. I’m hopeful. Sick and tired and frustrated. And hopeful. Because all of the stuff in all of those various pieces of luggage, and all of the people helping me carry it, when I add and subtract it all up, what I’m left with is hope.

I hope that you have hope, too. If you do, I hope that you can share it with someone who might need it. And if you don’t, I hope that maybe when you do some suitcase math you’ll be able to find some hope of your own.

I hope to see you here again soon.

And. Of course.

Happy New Year!

Happy Hopeful New Year!

IMG_0260

It’s been a long time since I showed my face here, I realized, and it’s nice seeing faces sometimes so here’s my face. Also my sister’s face.

Befriending my body

There is an enzyme in your body called carbonic anhydrase. It is involved in the interconversion of carbon dioxide and water to bicarbonate and hydrogen ions. Most importantly, these reactions help maintain acid-base balance in your blood. You never think about your acid-base balance because your body just takes care of it, but when this balance gets too far off you’ll be pretty sick and it can be an emergency. Carbonic anhydrase also assists in getting the carbon dioxide that your cells produce out of your tissues and into your bloodstream to be transported to your lungs for exhalation.

It’s a really important enzyme. It’s also a really fast enzyme. One of the fastest. There are different forms of carbonic anhydrase, but it can work at a reaction rate of up to one million per second.

One million reactions per second. One million!! Per second!!

Does that not just boggle your mind? Seriously. I mean, hummingbirds beat their wings up to 80 times per second; I can watch them flying and yet even that is hard to wrap my head around, something happening 80 times in just one second. And carbonic anhydrase works 12 500 times faster than that!

There are a lot of really cool enzymes but carbonic anhydrase is probably my biggest enzyme crush. It was definitely my first enzyme crush anyway, and you never forget your first crush. By the way, enzyme crushes are totally a thing. Or maybe they aren’t…?

I can picture you all reading this right now with a look of confused concern on your face because you’re just now realizing how geeky I actually am. But I can’t be the only person with a favourite enzyme? If you have a favourite enzyme let me know in the comments.

Anyway.

When you’re sick for a really long time it’s really easy to feel like your body is working against you. As the years go on and more body systems start to fall apart, you feel like your body can’t do anything right. Your body is fighting you. Your body hates you.

“My body hates me.”

I’ve said that so many times, and in so many different forms.

I’ve been saying it for years.

I remember back in university, whenever I had to explain why I couldn’t order from a restaurant like everyone else or whenever someone asked me about all the little containers of food I always had with me, I would explain by saying, “my stomach just doesn’t know how to be a stomach.” When a doctor would ask me why I had gastroparesis I would say, “No, I’m not diabetic, my stomach just likes to make my life miserable.” When I would need to sit down part way through a conversation I would say, “sorry, my body hates standing up.” And whenever a nurse would comment about all of the things wrong with me for someone so young, I would answer with, “yeah, my body hates me.”

“My body hates me.”

My body versus me. Me versus it. I guess pitting myself against my body like that was a coping mechanism? A way to assure myself that it wasn’t my fault? I was not my body, I was just stuck with it. And if my body hated me then it made it okay for me to hate my body.

“My body hates me.”

Then earlier this year I found myself feeling like a victim. A victim of my life, I guess, but when you break it down I was really feeling victimized by my own body. Everything that sucked about my life sucked because of what being stuck in my broken body had done to my life. My body hated me and I was allowing myself to be a victim of that hatred.

Except I absolutely hate that kind of victim mentality. And I didn’t want to carry that around anymore.

So I started making a conscious effort to change the language I use when thinking and talking about my body. My body doesn’t hate me…my body is doing its best. My body isn’t fighting against me…my body is working hard for me. It’s not that my body can’t do anything right…my body needs help with some things. Or a lot of things, but needing help is okay.

My body doesn’t hate me.

For every one thing going wrong in my body, there are thousands of things going right, thousands of things that I never even think about precisely because they’re just working perfectly day in and day out, flying under my radar. Like acid-base balance. Of course there are the things that used to fly under my radar that I now have to think about. But even still, the functions going right far outnumber the functions going wrong.

My body doesn’t hate me.

And when it’s hard to really believe this, well that’s when I remember carbonic anhydrase. All of the carbonic anhydrases working away at a speed I can’t even wrap my head around.

And that’s also when I remember the sodium potassium pump. And the DNA and the RNA and…and…and…and all of the other incredibly cool things happening at the molecular, cellular, tissue, organ and organ system level every single second of every single day. In my body. And in your body.

Even in my broken body, it’s all happening.

Because my body doesn’t hate me. And I am not my body’s victim.

I do live in this broken body, and I am stuck in it. I have to live in it, but also I get to live in it. And it works really hard for me. Besides, broken doesn’t mean destroyed.

We are doing our best, my body and I.

And all of the carbonic anhydrases. *swoon*