In Pursuit of Wholeness

The one on a Monday.

Hi. Hello. Good morning.

Today’s newsletter post is a little coffee chat about having a chronic illness. Letting you know that right away, because if that’s not your cup of tea, that’s okay — you can stop reading now. But it’s also about finding peace, and, maybe more so, wholeness.

In the last several weeks, I’ve had a few…eh, we’ll call them bumps in the ol’ health road. When you have a chronic illness, this is not to be unexpected; it’s sort of par for the course, something to be used to. Nothing about it was completely terrible, but it also wasn’t necessarily great — mostly for my peace of mind and mental health, and, I don’t know. Maybe for the future. Hard to say, which is the most difficult part. (I’m fine — don’t worry.💛)

I feel like at this point, after more than 35 years with a chronic illness — literally my entire life — I should be used to it. Shouldn’t I? There’s a seemingly never-ending supply of things that can possibly go wrong at any given time. Like Lucy working the chocolates conveyor belt, it never stops. In fact, sometimes it speeds up unexpectedly, right after you thought you’d gotten everything under control.

I’ve been very lucky throughout my life and had it pretty easy, as far as keeping up with preexisting conditions go, but still… having a chronic illness has built me into the Type A perfectionist that I am, because when you can’t control the biggest thing in your life, the thing that can take your life away, you start figuring out how to control everything else. How to make sure everything else you do is as perfect as possible, and to try to make the best decisions so as to not give the universe one more reason to have another shoe drop. Get everything else right. And of course, usually as soon as I start to feel like I’m in a good groove, have turned over all the rocks I could think of to get ahead of the problems I’m imagining could emerge, something new pops up. Often something I didn’t even know I needed to worry about. It’s a fun game.

And last week was one of those weeks. I thought I’d checked off all the things for my current season of life, everything I could think of, but no — I hadn’t. Something new arrived. The worst part really was that it took a couple days for me to get all the information about my situation. I know that may not seem like much — what’s one or two days, right? But in this case, when I didn’t quite know the extent of what the issue was, but I did know it was something that directly affected my health and that no one would tell me til my doctor told me themself, I found myself spiraling. It was all I could think about, and while I’m used to having to go about my days like nothing is wrong even when I’m in the middle of a personal fire drill, it felt extra hard. I found myself crying myself to sleep on Thursday, mostly just exhausted at the fact that I will never be free from something else falling from the sky (or from having to worry about it). I know that sounds like tough stuff, but listen — that’s life. Or at least life with a chronic illness. Sort of comes with the territory, I suppose. Speaking for myself only, sometimes it’s more mentally challenging than it is physically, and I’m privileged to have the people and resources I do in my life. At the end of the day, you have to figure out how to keep going, how to keep putting one foot in front of the other (and really, that’s true for everyone, regardless what your medical files may say — life’s hard for everyone).

There is an unending well of uncertainty, and I’m lucky that I was indoctrinated so early in my life. I imagine it would be very difficult to get swept into a chronic illness as an adult when you’ve previously not had to think too hard about your general health. I have so much compassion for anyone thrust into that situation, because goodness, that has got to be challenging. Anyways, of course everyone has uncertainty in life — none of us know what’s going to happen all of our days, or what our future will look like, and that’s part of the joy that is being human. But for me (and for many, many others), the uncertainty volume is turned up a bit higher than for most. And it’s on, every day, whether I want to pay attention or not.

Sometimes, like last week, it gets to me. Sometimes, I let myself rant to my husband how life is not fair, and how tired I am of having to constantly prepare for the worst. How just once, I’d really, really like things to be simple, or at the very least for me to be able to just not have to worry about the things that are more complicated because of a diagnosis. (Please don’t comment about how worrying is silly; it’s like a rocking chair — I already know. 🙃) Sometimes I just want to get to be carefree, but I can’t. These are aspects of life that I choose not to share with most people, and that I don’t like to talk about usually. Complaining doesn’t get you anywhere (sort of like worrying!). But there is always something around the corner waiting for me, a perpetual boogeyman under my bed. I know how to make peace with it, and I did a long, long time ago, but that doesn’t mean it’s easy.

I try not to let situations like last week get to me too much, but I do think it’s important to let yourself feel your feelings before you brush yourself off and continue moving on up the mountain. Life is a lot of things, and even if you’re someone with a really strong sense of self or mental strength, sometimes you do need a break. Sometimes you do want to complain or cry or scream, to not always be the tough one. Sometimes it is all just a lot. The older I get, the heavier it feels, and the harder it all is to maintain in a neat little package. You can be relentlessly positive and hopeful, and yet also feel weighed down occasionally from the weight of it all.

I was recently listening to the iconic Barbie movie monologue that America Ferrera’s character gives, and the spirit of it reminded me a bit of living with a chronic illness or disability. You can do everything perfectly, but it’s never enough. And you can’t say you’re tired, you can’t complain, because that’s not want society wants to hear. Most of the time, society ignores the fact that you even exist. Most of the time, no one can actually imagine the struggle, and they definitely don’t want to see it — not all of it, not really — and instead, the ones who have mastered persevering with a never fading smile on their face (me most of my life, tbh) or who say things like how it’s been a blessing to have their illness are the ones who get the light of society’s approval shined on them. You can be sick, but not too sick, basically, and when you have an invisible illness, it’s a whole other set of challenges. There’s no good way to have a chronic illness in this world, at least not right now, that’s what I’m trying to say.

(And hey — maybe it does feel like a blessing for some. In a lot of ways, I feel like mine has been, but that doesn’t mean that if I somehow got granted a magic wand that could remove it, I wouldn’t use it immediately. I wouldn’t have become the person I am without it, though, surely.)

This maybe all sounds like a giant rant or complaint, and if it does, I’m sorry.

But if there’s anyone reading this who can relate, I hope it helps you feel less alone.

At the end of the day, what I’ve come to realize is that life is…. well, all of it. It’s the consistently hard stuff and the surprises you didn’t want and the ways life knocks you down, but it’s also the surprises you didn’t know you needed, the joyful moments that lift you up and the things (and people) that remind you why it’s all worth it — the good, the bad, the in-between. You may not always be soaring with happiness or even sure your pal the rain cloud will move on, and that’s okay. Life is a mosaic.

I read this quote about happiness recently (thanks to Cup of Jo), and I think it sums it up:

“I actually attack the concept of happiness. The idea that - I don’t mind people being happy - but the idea that everything we do is part of the pursuit of happiness seems to me a really dangerous idea and has led to a contemporary disease in Western society, which is fear of sadness ... Wholeness is what we ought to be striving for and part of that is sadness, disappointment, frustration, failure; all of those things which make us who we are. Happiness and victory and fulfillment are nice little things that also happen to us, but they don’t teach us much. Everyone says we grow through pain and then as soon as they experience pain they say ‘Quick! Move on! Cheer up!’ I’d like just for a year to have a moratorium on the word ‘happiness’ and to replace it with the word ‘wholeness.’ Ask yourself ‘is this contributing to my wholeness?’ and if you’re having a bad day, it is.”

-Hugh Mackay

Perpetual happiness? Nah. But wholeness... That’s something I can get behind.

+++++++

Whew. If you made it to the end of this week’s essay, gosh — thank you. I was more than a little nervous about hitting ‘send.’ But I needed to write it, and maybe there’s someone out there who needed to read it. I hope so, anyways.

And I’d be remiss not to mention that if you’re struggling, there’s people out there who can help, and a good therapist is worth their weight in gold.

One more thing — if you’re looking for a new song to add to your listening rotation, I am obsessed with this one from Zac Bryan and Maggie Rogers. And if you want something to watch, personally I’ve been into rewatching old favs, and am currently on a “Younger” binge. If you’ve never seen it, it’s about the book publishing industry — but also sort of a rom-com in series form. I love it.

Thanks for reading and happy Monday,

Joelle

P.s. if you enjoy this newsletter and want to help others to find it on Substack, make sure to like this post and/or share it on your social media feeds. And let me know what you’d like to see here this year and how you’re doing by leaving a comment. 🥰