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.

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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.

 

 

If I could talk to medical students

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The upside to students and residents. Sometimes I have fun at their expense.

I miss my family doctor.

That sounds like a really weird thing to say, seeing as I just saw her on Thursday, but I miss her. Because I haven’t seen just her in months. My family doctor teaches medical students and family medicine residents, and since last July I’ve only seen just her a couple of times. I’ve seen at least seven students in the last year, but there are probably some more that I’m forgetting. And I’ve had four appointments in a row now with students. So I miss her.

I mean, I still see her, but it’s not the same. When there are students, the appointments take twice as long, but I have probably less than half the usual time with my actual doctor. I’m very used to students and residents in the hospital, but it’s different when I’m seeing my family doctor. She’s the one who already knows everything and so it’s supposed to be easy. Students make it more complicated.

Anyway, I’ve seen a lot of students lately. And I have a lot of thoughts about the whole thing. And if I could talk to medical students everywhere this is what I would say.


You all generally have one of two reactions when you start talking to me about why I’m in front of you.

Some of you are quite obviously not interested in having me as your patient. I’m sure there are lots of possible reasons for this. I can guess at a few…you’re not interested in family medicine; you’re tired and you just want an easy patient; you’re uneasy because I know more about my conditions than you do; you’re put off because before you walked in my doctor straight up told you that I know more than you do; you’re hungry; you’re overwhelmed because med school is stressful…and I’m sure there are a dozen other reasons that I can’t understand because I’m not a med student.

I don’t hold it against you that it’s pretty obvious you don’t want to deal with me. Just keep in mind that if you’re not interested in dealing with me then I have no interest in dealing with you. I’d rather just see my doctor, so let’s hurry this up so she can come in.

Most of you have a very different reaction.

You are super interested and intrigued by me. I have conditions you’ve never seen before, maybe you haven’t even heard of them before, and this is exciting to you. I get that because I, too, am fascinated by the human body, how it all works and how it all goes wrong. I like that you’re eager to learn everything you can to be the best doctor you can, but please realize that what is a “really cool diagnosis” to you is less cool for me. Learning about rare and difficult to diagnose conditions is one thing, living with them is another very challenging, isolating and all-consuming thing. Please remember that. If you ask me whether I’m working or going to school, I will tell you that my job is keeping myself alive. And I really mean it. Please respect that.

You ask a lot of questions, and not just about why I’m in front of you on this particular day. I understand why this is necessary, because I’m never there for something straightforward, but rather something related to something else going on. You need to ask a lot of questions to get the whole picture. And then some, because I’m there to talk about a medication and now you’re asking me about disability rates in BC. Oh but wait, I can’t eat? What’s that like? Isn’t it hard to watch other people eat? How does TPN at home work? And where exactly does my central line go?

Again, I appreciate your interest in learning more. I like that you’re asking questions that medical professionals don’t usually ask me. They all know I can’t eat, but none of them ever ask me what that’s actually like. That said, I know my appointment time is limited. I would love to talk to you about all these things, and I wish there was enough time to cover it all, but there’s not and I need to get what I came in for. Yes, I want you to learn from my case, but I’m here to be a patient, not a teacher. And I know that you’re a student, but I also need you to be my doctor. I’ll be both if you’ll be both.

Since I mentioned my central line, can we talk about that for a second? Yes, TPN is amazing and it’s very cool that science has figured out a way to keep me alive even though I can’t eat. Yes, it is awesome!

It’s also terrifying. My life is on the line so that I can live. Let that sink in for a second. I’m fairly certain your reaction would be a lot different if you learned someone’s central line was in place for chemo. You would immediately understand that they had been through a lot, but it’s important you understand that I’ve been through a lot, too. I didn’t just end up here. I’ve had a lot of tests, a lot of procedures, and I’ve spent a lot of time in the hospital. And I will never be on the other side of that, but rather it will always be part of my present.

I just need you to remember that I’m a person. I’m a page of a textbook come to life on the exam table in front of you – footnotes, glossary and pharmaceutical information included, but I’m still a person. I’m your patient. I came to see a doctor. Actually, I came to see my doctor. That’s who I really want to see today.

And I don’t intend that to be mean, but you being here has me pulled in two directions. On the one hand, I really support and believe in your education, and I understand my role in that. That’s why I will always be cooperative, patient, and answer all your questions. Besides, if you’re going to learn from someone I want you to learn from my doctor because she’s excellent.

But on the other hand, I’m sick and I’m tired. I’m here because something is wrong and telling my entire story to someone new for the sixth or seventh or eighth time is exhausting. I don’t want to explain everything to someone I’m never going to see again. I just want to see the person who already knows everything.

When all is said and done, though, I know you don’t have an easy job and I don’t resent you doing it. I know you’re doing your best to be both a student and a doctor at the same time, all while trying to learn everything about everything. That can’t be easy and I want you to know you’re doing a good job.

So you keep doing your job, and I’ll keep doing mine, and we’ll go from there.

Bigger than my something

FullSizeRender (1)Open the box of medical supplies. Start to unpack it. First the saline flushes. Then the alcohol swabs. Then the big Ziploc bag full of all the odds and ends. Batteries, positive pressure caps, needles, syringes, dressings, iodine swab sticks, skin prep, gauze, gloves. Quickly glance at the expiration dates and all is good. One by one, everything to its respective spot in its respective drawer.

Finally, the box of IV tubing sets. Open the box and open their drawer. Ready to put them away. Wait, check the expiration date. 2022. Oh right, compared to all of the other supplies these are always good for the longest. 2022, no problem.

2022.

2022…oh man. That’s five years away. Five years!

Five years…five whole years…

That’s twice as long as I’ve been on home TPN so far. Where is my calculator? Don’t do it. Don’t get out the calculator. Too late.

Five whole years. That’s about 1800 nights of setting up my TPN. I hate setting up my TPN. I dread it every day. I can’t believe I have to do it 1800 times in the next 5 years. And then all the years after that. But you’re lucky to have your TPN. I know, but I still hate it.

1800 nights of TPN means 1800 TPN bags. That’s 4500 litres. That’s almost 10 000 pounds. 10 000 pounds of TPN. 10 000 pounds of smelly chemicals being pumped into my body. Ew. But isn’t it awesome that medicine has found a way to keep you alive? Yeah. I guess. Still. Ew.

I wonder if I’ll still have this central line five years from now. It’s my seventh in less than three years. So probably not. But maybe. I hope so. It’s already lasted longer than most of my previous ones. That’s good. I can’t go through lines as quickly as I did for the first few years because if I do then in five years I will be running out of places to put them. Remember what the radiologist told you. They can get creative. This one will last. It has to.

In five years I will use 5400 saline flushes and 25 000 alcohol swabs. I will use 3750 needles and syringes to add 9000 vials of vitamins and medication to my TPN. These are just numbers. Don’t give them power. In five years I will change my dressing over 250 times. I hate changing my dressing. It’s not that bad. I still hate it.

In five years I will have my blood drawn a minimum of 60 times. But it will probably end up being at least 100 times. Why does this even matter? Since when do you care about needles? Drawing blood is getting trickier. Old Faithful hasn’t let you down yet. That’s not true. He’s not as faithful a vein as he used to be.

Oh gosh, I don’t even want to think about how many thousands of dollars of medication five years is. It’s about 30 000 dollars for just one of them. That one is covered. For now. Until they decide to cut off my special authority again. Then you’ll get it renewed again. Unless they decide to stop covering it altogether.

Five years. 1800 nights of TPN. 1800 nights in general. I wonder how many hundreds of those nights I’ll be up until the wee hours of the morning because I’m too nauseated to sleep. Then 1800 mornings of waking up already tired whether I slept well or not. And 1800 nights and 1800 mornings means 1800 days. That’s a lot of days. So many of them will be too long. And for so many of them I will feel sick or exhausted or useless or frustrated or lonely. Or all of the above.

No more numbers. Put the calculator down. Okay. Fine. But I don’t need a calculator to tell me how old I’ll be in 2022.

In five years I’ll be 30. Each year I feel myself falling further and further behind my friends, behind others my age. Will I even have anything in common with them still? Even more of them will have careers and live in places of their own. Even more of them will be traveling to awesome places. Even more of them will be getting married and having kids. Some of them will have all of these things. I want all of these things, too. I’ve always wanted these things. I will probably have none of them.

In five years will things be worse than they are now? How much worse? When will they get worse? How quickly? Maybe things will be the same. I don’t want that. I don’t want 1800 days of the same. I want things to be better. Maybe they will be. They probably won’t be. No, probably not. Maybe the same, though. Maybe. But they’ll probably be worse. I don’t know what you want me to say. I don’t know know either.

Just stop. Don’t go there. I can’t help but go there sometimes.

Do not let this swallow you. I’m already swallowed.

Everybody has something. This is your something. My something is too much sometimes.

I know. But you are bigger than your something. I feel small.

I know. It’s okay. Okay.

You’re going to be okay. Everything is going to be okay. Because I will make it okay, even when it’s not okay. Exactly. Things will work out however they work out. And however they work out will be okay. 

IMG_2981You are bigger than your something. I am bigger than my something.

You are bolder and braver and brighter than your something. You have more joy than your something does sorrow. You laugh more than your something makes you cry. You have found a way to live with your something. You keep living in spite of it.

I am bigger than my something.

You will be okay.

I am okay.