Chronic illness: fire by fire

It’s a pretty long and complicated story and I’m not going to get into it all now, but in the spring, after I had genetic testing done, I was undiagnosed with EDS and re-diagnosed with something different. It caught me off guard but with time and research I was able to wrap my head around things. The reason I didn’t say anything is because even though the geneticist diagnosed me, I was waiting until I saw a specific specialist to clear things up further.

I finally saw that specialist on Monday. Though I thought I would be writing a very different post this week, frustratingly, nothing was cleared up; a lot of what she said was opposite to what the geneticist said. It was very confusing. Also heartbreaking. Because for now, I don’t have a diagnosis. She’s looking into things more and so this heartbreak might all be for naught, but I’m currently undiagnosed. And crushed. And out of fight.

And I know that unless it’s happened to you, it’s hard to understand why I’m so upset about this, why a diagnosis even matters. Here is why.

You live in a house.

This is not just any house. This is a house that you never get to leave. And that sounds suffocating but it’s not because it’s not that you never get to leave this house, it’s that you never need to leave it. You work, play, sleep, eat, and socialize in this house. Everything you need is inside this house.

Until one day, out of nowhere, one of your rooms burns down.

How strange is that? You didn’t even know that individual rooms could just burn down like that. You talk to a house expert who talks to a house sub-expert and they tell you that sometimes rooms just burn down for no apparent reason. That’s a bit unsettling, but eventually you just have to accept what happened. It complicates things, sure, but you’ve still got a house full of fire-free rooms. You’ll make do.

Until one day, it happens again. Another room burns down.

Okay. Wait just a minute, now. What is happening here? This must be related to that other room that burnt down, right? You consult the house experts and once again they tell you that sometimes these things just happen. You don’t totally buy it but what else can you do? You’re not an expert. You just have to readjust.

And then, before you know it, another room has burnt down. And then another. And another. Plus four other rooms are on fire.

Okay, now there’s no way this isn’t all related.

You bring in a house expert who calls in another expert. And when that one doesn’t know what to make of your house another expert gets consulted. And even more after that.

They all start off the same way. They stand on your front doorstep, confident that they can figure out why your house keeps burning and how to make it stop. They reassure you that together you’ll figure this out. And because they’re the experts, you trust them. You believe that they will help you, and so you let them in.

After they do their inspection, each new expert realizes that they really can’t figure out why your house keeps catching fire after all. And because of course if the expert can’t figure it out then it must be your fault, some of them ask if maybe you’re starting the fires yourself. What a ridiculous question. Of course you’re not setting your house on fire! They tell you to try not to let the fires ruin your house, which is just the most baffling thing because by its very nature fire is destructive. They tell you to just keep breathing. Do they not realize how hard it is to breathe when every breath you take is full of smoke?

And then, despite what they said, despite how they promised to help, the experts end up shrugging their shoulders and walking out the front door. After it happens enough times this stops surprising you, but it never stops hurting you.

Hurt as you may be, you resign yourself to just try and keep breathing while you wait until another expert comes along.

Meanwhile, your neighbours keep offering you ideas about how to stop the fires. They’re not house experts, and their own houses have never been on fire like this, but that doesn’t stop them. Try water, they say. Use a fire extinguisher, they say. You’re so confused because of course you’ve tried those things already! Some of them tell you to just stay positive and then your house will stop burning. You’re not really sure how smiling at the flames is going to help matters but you’re doing your best to smile anyway.

Somewhere along the way you start wondering if maybe you are in fact starting the fires yourself. Even though you haven’t used your hair straightener since the first fire started, maybe you left it plugged in. Maybe you left a candle lit. You don’t own any candles, but maybe that’s what happened anyway. Maybe, if you just stop thinking about the fires then they will stop happening.

Except that doesn’t work because while you’re trying to ignore the fires another three rooms burst into flames.

You look out the window and see your neighbours living their lives in their houses that aren’t on fire. It’s been so long that they hardly even notice the rubble within which you live anymore. What you would give for a breath of that clear air they’re breathing; they don’t know how clear their air really is.

A few more rooms have now burnt down. Even more are on fire.

Now your awesome house with everything you need is not so awesome. You’ve lost the kitchen. You’ve lost the office and the rec room. So many other rooms, too. You’ve lost most of your windows and doors. You don’t get to work in your house anymore. You don’t get to have fun in your house anymore. You’re always exhausted from trying to stop the flames, from trying to stay one step ahead of something that’s one hundred steps ahead of you.

Now you do feel trapped in your house. And scared. Because you keep losing rooms and no one knows why. Because you’ve already lost so much, and as time goes on and more of your house catches fire you’re left with less and less. You don’t know when the next room will be destroyed.

Your house was everything and now the fires have left you with almost nothing.

It’s clear that something is wrong with your house. Everyone knows it. They can see it. They just don’t know what’s wrong. And they don’t know why ‘the what’ matters.

But there you are, choking on smoke while, fire by fire, your house burns down around you, and there’s only one thing you know for sure:

It matters.


Care. Feel. Rally. Repeat.

I feel like I complain kind of a lot. I get disappointed and frustrated fairly easily. And I pour out these disappointments and frustrations on the internet fairly often. At least that’s how it seems to me. So I find it surprising that people still make comments about how I’m always positive. They want to know how I do it.

The answer is simple. I don’t.

Seriously, though. I’ve been thinking about it, and the reason I’m always positive is because I’m not. And I know that sounds confusing. I guess a better way to say it is that the reason I am able to be positive is because I don’t stay that way.

It’s because first, I feel the feelings. Then second, I regroup. I bounce back. I rally.

It’s not at all that I’m always positive, but rather it’s just that I’m really good at rallying. And I think the reason I’m good at rallying is because I let myself feel the feelings first.

Just before I started writing this post, I was looking around my room trying to figure out exactly how to say what I wanted to say, because of course all the best inspiration comes from staring at walls. In this case, however, I really did get some help from the walls. Well, I got some help from my calendar, but my calendar hangs on the wall so I think it still counts. Anyway, being that it’s the last day of September, it seemed like a good time to actually read this month’s quote. Here’s what September says…actually here is what someone named David Whyte once said:

The task is not to live a life in which we never have our heart broken. The task is to become larger with each heartbreak.

Life is full of heartbreak. Sometimes it seems like that’s all there ever is. Heartbreaks, letdowns, roadblocks, disappointments. But these heartbreaks, letdowns, roadblocks, and disappointments only exist because we first have wishes, hopes, goals, and expectations. And these are good things.

It is possible to never be let down in life, to never be disappointed. It’s possible to never feel heartbroken. You just have to never care about anything. Easy.

Easy, sure. But if you don’t care about anything, what is even the point?

I’ve tried not caring before. I thought it would be easier. I thought I was protecting myself, because after enough losses, after enough spirit crushing setbacks, sometimes it seems easier to just not care. If I don’t care what happens with my health, then so what if things get worse instead of better? If you’re not invested in your job, then what’s the big deal if someone isn’t happy with your work? If you distance yourself from the important people in your life, then they don’t have to take on your problems and you don’t have to take on theirs. That’s just better for everyone, right?


Not caring is exhausting. So is pretending not to care.

Caring is exhausting, too, actually. It means living through the heartbreaks, letdowns, roadblocks, and disappointments, and these are exhausting. But it also means learning through these things, growing through them. And it also means opening yourself up to purpose and connection, excitement and fulfillment. And joy. Caring creates joy.

Then when caring hurts, which it will sometimes, feel it. Feel the sadness and the sorrow. Feel the frustration and the grief. Feel all the feelings. And remember that you’re feeling them for a good reason. You’re feeling them because you had hope. Or because you made yourself vulnerable. Or because you allowed yourself to dream. Or because you took a risk. You’re feeling them because you were brave enough to be hopeful and vulnerable, and to dream. Because you were brave enough to care.

And sure, you can pretend not to care. You can carry on without feeling the feelings, but then you’ll have nothing to learn from. You’ll have nothing to grow and change through. Those feelings that you denied won’t go anywhere and instead they will start wearing you down. My calendar says the task is to become larger with each heartbreak; well you can’t become larger through heartbreak without first feeling heartbreak. And you can’t feel heartbreak without first caring about something.

Those times that I tried not caring, I did so because I was miserable, and trying not to care only made me more miserable. It didn’t make it possible to be positive all the time. In fact, it made it pretty much impossible to be positive any of the time. Some things are worth caring about; they’re worth the sadness, sorrow, frustration and grief. And the reason I’m able to rally, the reason I’m able to be positive any of the time, is because these same things are worth rallying for.

So care. And then feel the feelings. But try not to give them too much power. And then pick yourself back up. Regroup. Rally. Come up with a new plan. Because if it’s worth caring about then it’s worth rallying for. Because you’re worth both. Because so many things in life are.

And then, start all over again.

Care. Feel. Rally.






A story about a story

I’ve been thinking a lot about stories. The stories we tell and the stories others tell. And how when two different people tell a story about the same thing, the two stories told are never quite the same.

I’ve been thinking about this because I’ve been reading through my hospital records.

When you’re a patient in the hospital, your chart is this big secret. I can think of a lot of reasons for this and if I worked in a hospital I wouldn’t want my patients reading their charts, either. But after the fact, after discharge, you can request a copy of that big secret. Which is what I recently needed to do. Really I just needed to know one thing from one admission, but curiosity got the better of me and I requested them all. They say that curiosity killed the cat…I always say that if I were a cat I’d be long dead for this reason.

That said, as curious as I was to read through everything, I was also a little apprehensive.

The reason reading through my hospital records has me thinking about stories is because that’s exactly what my records are. A story. A story about me. But not told by me…did I really want to read my story from someone else’s point of view? And not just a story told by someone else, but a story about some of the hardest times in my life…did I really want to read through and re-live all of that?

Like I said, I was a little apprehensive. I mean, my apprehension to curiosity ratio was probably one to ten, so not nearly apprehensive enough to stop me, but a little apprehensive still. I told you, it’s a really good thing I’m not a cat!

It turns out I needn’t have been apprehensive.

For one, reading through everything definitely did resurface a lot of memories, but not in a distressing way. In a matter of fact way. What happened, happened. There are some bad memories, but every bad memory is just that, a memory. I lived through it and now it’s the past. Plus there are positive memories, too.

And secondly, well, my chart is really boring. And I mean that in the best way possible. I find it all interesting, of course, but it’s really not very exciting. It’s all just very clinical and objective, as a chart is meant to be.

To me, though, as the person who lived through it, it feels incomplete. My chart is a clinical story as told by the clinicians. And so it’s biased.

One example…of many…is the doctor who made it clear to both me and my GI that she didn’t believe my issues were legitimate and that his treatment plan was unnecessary. I was a bit nervous to find out what she wrote in my chart, but literally all she entered was an order for a CT scan. And so my chart is incomplete. It doesn’t tell the whole story. It doesn’t tell my story. It doesn’t talk about all the times I was made to feel judged, belittled or less than.

The things that stand out the most in my memory can’t be found in my chart. But there’s another side to this.

Like the year I was in the hospital for Thanksgiving. My doctor was on call that weekend and so he popped in on his way out to say hi and then ended up staying and talking with me for close to 45 minutes. Read my records and you won’t find any mention of that, either, because he wasn’t there out of obligation, but rather out of kindness. As I said, my chart is incomplete, because it also doesn’t talk about all the times that I was treated in a way that assured me I was a person first and medical problem second.

So it goes both ways.

And even though the records feel incomplete to me, I know that medically they say what they need to say. What this has really made me realize is just how much the experience of being in the hospital has nothing to do with what gets charted.

When I’m in the hospital I don’t know what’s going on behind the scenes, but I do know how I’m made to feel. It’s the words, actions, and body language of people who work in the hospital that have the most impact. I won’t remember what my vitals were, but I will remember if it seemed like the person taking them would rather be anywhere else. I will remember if I didn’t feel comfortable ringing my call bell for fear of being a colossal nuisance. I won’t remember the exact answers to the questions I ask, but I will remember if I felt it was okay to ask them. My experience is defined by my interactions, not by what’s written in my chart.

Recognizing this, I do realize how much pressure this puts on doctors, nurses, and everyone else involved in patient care. I realize that just like patients, they’re people with thoughts and feelings and good days and bad days, and days where they really would rather be anywhere else than taking a patient’s vitals. I also realize that as a sick and scared patient, my feelings of vulnerability lead me to read more into what they say, what they do, and how they do it, and that sometimes this makes me misjudge. I understand now that even when I’m certain someone doesn’t like me, they’re probably not writing all sorts of horrible things in my chart. And even if they want to, they probably don’t have the time!

So as incomplete as my records feel to me, I’m really glad I decided to request them. I learned a lot. I have a better understanding now of how things work on the other side of the equation and I feel at peace with everything.


I also got a workout carrying them around.

At the end of the day, it’s all just a story. And a fairly boring one at that. A story about me but not told by me. A story that ends with me walking out the doors of the hospital.

There’s also a story about me, told by me. And it’s here. I’m telling it as it happens. And it doesn’t have an ending.

And so, friends…

…to be continued.