I am a researcher, working on educational games, science education, and data visualization. I like photography, soccer, traveling, and teaching my dog new tricks.
After trying out ungrading last semester (Fall 2022, read about it here), I wanted to reflect a bit on how it went and what kinds of things I think went well and what I will change for next time. I had three main goals for doing this: (1) to reduce anxiety/stress for the students around grades, (2) to help reinforce ideas about how learning works, and (3) to allow for more flexibility and to prioritize learning goals that the students have for themselves.
Now that the students have submitted their final reflections and grades, I’ve been able to reflect on how well I think we achieved those three goals and plan changes for this semester.
Reducing anxiety and stress
In terms of student anxiety, I do think it helped with that, but it took a bit of convincing. Old habits die hard and over the first few weeks of the semester I had to keep reminding students of the ungrading approach. A few students asked about their grade a few weeks into the course, and I in turn asked them how they thought they were doing in the course. They were not used to this question, and some students needed more reassurance that it was really going to be ok that they didn’t constantly have someone else telling them how well they were doing.
In their final reflections, multiple students reported feeling relieved from the “the stress of getting high grades” and being able to focus on what they’re learning instead.
I do think that my ungrading approach lowered their anxiety and stress for my classes, but I worried that my flexibility would make it so that they de-prioritized my class so much (in order to fulfill the non-flexible standards and meet the stress of their other classes) that they would either not meet the learning goals we set out to achieve or that they would just not do some of their assignments at all. And for sure, some students turned things in late and some decided not to do a few assignments at all. Which is their prerogative. And was the point. It’s up to them if a certain assignment is worth their effort and time. My job is to convince them that it is worth their time and that it will help them understand the material better.
Improved understanding of learning
One student said: “It was nice to see that I was motivated to work on each of the class assignments because I was aware that I was going to get a benefit from the learning process and not because of the pressure of a grade.“
What are assignments for? Why are we doing the things we are doing in class? I wanted to really grapple with these questions myself as I planned for instruction, but also include my students in reflecting on what they were learning and why I had structured things the way I had.
It made me sort-of rethink each assignment and each assigned reading and class activity. Because I had to justify their inclusion to the students differently than before. My argument was that my job as their instructor was to create an environment conducive to learning (including picking out readings, creating assignments to reinforce the content in the readings, structure class activities around that, foster a specific kind of classroom environment, etc.) and their job was to do that learning. But part of that agreement was that I needed to explain (at least explicitly to myself, if not to them) why I chose to structure the class this way and why I asked them to do certain things. I had to be more explicit in my decisions, which was a good thing and will continually improve my design of these courses and my teaching.
Flexibility and individualization
We are still in the middle of a pandemic, and still need to provide flexibility to our students. But, of course, we should be doing this anyway. Things are still going to come up (people getting sick, people dealing with family members getting sick, conference travel, etc.). Allowing students more agency in choosing to do or not do assignments (or to do them late or do them up to the effort level they had available at that time) is a net good, even if it makes things a bit more difficult on my end (i.e., I might have things back-loaded in terms of giving feedback to lots of late assignments). But I also realize that this flexibility on my part is only possible because I have relatively small classes of graduate students who are mostly responsible. This approach would need to be altered quite a bit for a large undergraduate class. There are different challenges with different types of classes, and if you want to adapt some kind of ungrading for your class, you will need to think carefully about what kinds of boundaries you can set up with your time (or your TA’s time) to balance that with the flexibility you can give the students.
Reflections on my teaching
In reading their final reflections, I got a better sense of what they learned than I typically would have just from my observations of them during class and through reading their assignments. It was really nice to see the additional level of understanding about what they did or did not learn and how it has helped them both in and outside of class. So, not only did the reflection help the students (I believe) in being more aware of their own learning, it also brought me into their minds more than normal which allowed me to have new insights into their learning and my teaching.
Ungrading and confronting academic ableism
Ableism is rampant in academia. This post is not set up to fully unpack that or provide full solutions for confronting that. But, I do think that ungrading can be helpful in revealing some of these built-in ableist policies, addressing this ableism in a small way, as well as offer some avenues for reducing the burden that typical course requirements and deadlines pose on disabled students particularly.
Some students gave themselves lower grades solely because of missed deadlines. They are used to being penalized for late assignments because traditionally schooling cares more about deadline adherence than about learning. This is unfortunate.
Through the process of revealing more about why instruction and assignments are organized a certain way, we can also interrogate the reasons behind how things are traditionally done. Being forced to justify these instructional decisions should help instructors (and students, to some extent) understand more about how many of these policies are not for learning reasons but for other purposes. If you haven’t interrogated why you are taking points off for late assignments, it might be a good idea to start thinking about that.
Final thoughts
I guess the main question I have now (and you, dear reader, might have for me) is whether or not I would do this again. And, I’m happy to report, that I am implementing ungrading again this semester with another graduate seminar course. As to whether I will attempt it with an undergraduate course for pre-service teachers at some point in the future, I’m still a bit unsure. But I am convinced at least that this approach has lots of promise for improving teaching and learning.
Even though we are still in the midst of a raging global pandemic and there’s tons of bad stuff happening, I decided nonetheless to make a substantial overhaul to my fall classes this semester. I guess we will see in time if this was a good decision or not.
I am trying out a variation on ungrading. My version will include additional reflection prompts and discussions with the students, to help them be more cognizant of their individual learning goals and how they are progressing toward them during the semester. We will check in at multiple times to see how they are progressing and see what kinds of additional or alternative supports they might need from me or fellow students. At the end of the semester, each student will make a written case to me about what grade they think they deserve and why and if it diverges greatly from my assessment of their learning, we will discuss it. If they are underselling their achievements, I will give them my higher grade; if they have an overblown idea of what they accomplished, we will have a chat (I don’t expect this to be a big issue, at least not with these students). Most students in these two classes usually get an A or A-, so I’m not overly concerned with this screwing things up too badly. The hope is that it will do two things: 1) reduce student anxiety and 2) have everyone focus more on how and what they are learning.
I got rid of all points associated with assignments in Canvas. This was the most nerve-wracking part for me. It finally felt real, even though I had been talking about it and thinking about it and planning around it for months. No points. The grade tab would be meaningless. 😳
I am teaching two graduate courses this semester, both of which I’ve taught multiple times. If I was teaching undergrads or a brand new course, I doubt I would be trying this out. Too many new things at once could be hard, and I feel like grad students are going to be easier to convince that this approach will work than undergrads (also, the undergrads I typically teach are in a teacher licensure program and they have a lot of specific requirements). This approach will probably end up taking up more time than what I used to do, but I think it will be a lot better. Grading always made me uncomfortable, and I feel like this approach is going to help me give better feedback to students and support them in better, more tailored ways.
I just finished teaching this first week and introducing the students to the concept of ungrading and walking them through the general plan. Some students seemed a bit puzzled when I talked about it and others were visibly excited (those folks seem to have recognized the term and had some familiarity with it). I think a lot of them are cautiously optimistic. For next week, they will each write up a summary of what their learning goals are for the course.
If you’re interested here’s the language I put in my syllabi around this:
I am trying out a non-traditional grading approach this semester, a variation on “Ungrading” (see Blum, 2020 for more on this). This is partly to relieve some anxiety around points and grades and also to help focus our attention on the process of learning rather than a particular letter grade. This might be in flux a little bit and your thoughts during the process would be helpful for tweaking it and making it successful for everyone. It will involve likely more effort on your part, mostly in the form of being more self-reflective about your learning throughout the semester. I will provide feedback on my observations of your learning as well as providing structure and opportunities for this reflection. Sometimes this feedback will be part of whole class discussions and sometimes it will be individualized. At any point during the semester, I would be happy to sit down and talk with you about how you feel you are progressing with the course content.
You are the person most responsible for your learning. My job as an instructor is to create and structure an environment that will facilitate this learning. I can’t do the learning for you and I also am not the person best suited to knowing whether or not you have really learned the material in a way that is consistent with your learning goals. Each of you are in this class for a different reason. The more that you can reflect on your progress toward your particular learning goals and communicate that to me, the more successful this class will be.
Learning will happen through your engagement in the class content, working on the assignments, and discussing the topics with your fellow classmates. Being fully present in class is an essential part of this process. The more you can be honest with yourself and your classmates about what you don’t understand or are struggling with conceptually, the better we will all be in terms of addressing those concerns together. Of course, not everyone will feel comfortable at first sharing with others in the class, but one of my goals is to create a learning environment in which you feel safe in openly talking about what and how you are learning and what you still need to understand.
What this will involve:
Reflection activities about your learning goals and progressing towards those (and perhaps editing them) throughout the semester
Self-evaluation of your major assignments and final project
At the end of the semester you will make a written case to me about what grade you think you deserve and why and I will compare that to my assessment of your learning. If there’s a big disagreement between our assessments, we will meet and discuss.
Finally, I’d like to thank the members of our little ungrading book club in the spring of 2022 for sharing your thoughts and concerns and ideas around this. The few of you who had already tried this gave me hope for trying this out.
Well, we are doing this again. This past June, when we had a few weeks of almost-normalcy (at least for us vaccinated folks), I really didn’t think we’d be back here again facing another semester of masks and testing and uncertainty and worry. But here we are.
I am lucky because my university has been taking this pandemic seriously from the very beginning. I want to mention that specifically because I know that many other colleges and universities have not done this or have really leaned into ignoring the real and serious harms that can occur when this is not taken seriously. We have had on-demand saliva-based PCR testing available to us as often as we’ve wanted it for the past year. I go to campus, spit into a tube, and a few hours later get a result pushed to an app (and email). That alone was a huge help to me during the last year before I got vaccinated in order to give me some relief to my anxiety about covid.
For this fall semester, they have required everyone to be vaccinated, for which I am very grateful. We still have testing available and I will still go get tested every week (and will encourage my students to do the same), especially now that we’ll be back on campus a bit.
I have chosen to teach in person this semester (and yes, it was a choice, and again, I am lucky that I had this as a choice and that it was not forced on me like at other institutions). This was due to the current set of circumstances, which could change throughout the semester. First, I am teaching two graduate-level courses that are relatively small (10-15 students typically). I have taught them both before, both in-person and remote, and I feel strongly that the class is better when it is in person. It is also, frankly, easier for me to teach in person. Because I am vaccinated and everyone else should be vaccinated and we will all have to wear masks the whole time and I am bringing my portable HEPA filter with me, I feel like it is worth trying to doing this in person. (If I had small children at home who are unvaccinated or if it was a larger class of undergrads – like I’ll have in the spring – I might be making a different choice.) But I am also, in the back of my mind, making alternate plans in case things get worse in a few weeks or a month or two and we’ll have to transition back to remote. I think that’s definitely possible and it won’t be awesome and hopefully we won’t have to do that (for multiple reasons), but at least I know I can manage that and it will be fine.
It’s very strange seeing people back on campus. The calendar in my office is still on March 2020. The vibe seems to be hopeful but uncertain. At least, that’s how I feel. My dog is upset that I am not working from home every day anymore. But, like us, she will adapt.
Also, last fall I added a pandemic and coronavirus statement to my syllabi. I’m including it again this year and have copied it here in case you might find it helpful to adapt to your syllabus:
Pandemic and Coronavirus statement
We are attempting to have as normal of a semester as possible during a global pandemic. I think it is important to remember that this is happening in the background of our learning this semester. The pandemic will affect us all in different ways and at different points in time throughout the semester. It is crucial that we are kind and empathetic towards ourselves and each other during this time. We need to be flexible and adaptable and we need to center caring for each other.
I want to be very clear: your health and the health of your family, classmates, and your community is the most important thing. This includes both your physical and mental health. Please keep me updated with how you are doing and if you need extensions on due dates or other support. I don’t need any specifics about what is going on, I just need you to tell me what you need.
Try not to compare yourself to others; you don’t know what others are or are not going through (this is good advice even when we’re not trying to get through a pandemic).
Recently I did a webinar with my colleague Joshua Rosenberg, hosted by the Center for Open Science, on Analyzing Educational Data with Open Science Best Practices, R, and OSF. You can find a recording of the webinar here and our slides and an example R Notebook are in an OSF repository here. I thought I would do this blog post to summarize some of the main things I talked about there and highlight some of the more important aspects.
This webinar was ostensibly about open science for educational data. I think most of us want to engage in more open science practices (which could include open data, open materials, preregistration of studies, replication, posting preprints, and reporting null results) but don’t know necessarily where to begin or what tools to use. I think we tried to make the argument that workflows, procedures, practices, and behaviors that are good practice for you by yourself, future you, and your internal team can also be good for open science. And that using R and its many packages and tools is a good way of achieving those goals.
I’ve written many times before about how much I love using R and how I want others to incorporate it more into their practice. I’ve now collected the series of blog posts as well as other related blog posts (like this one!) and slides onto one page for easy access. You can go to cynthiadangelo.com/r/ to see all of the R related stuff that I have worked on linked in one place.
In general, I’ve been thinking a lot lately about my values and commitments as a researcher and how I approach my work in a very basic way. What is important to me, my collaborators, and my field? How could I be doing things differently or looking at my assumptions differently?
This thinking led me to this set of things to consider for a more open science approach:
There are a lot of technical tools and solutions to some of the open science problems. But there are also philosophical/ethical/moral issues to consider.
Humans are participants that helped produce your data. All humans deserve respect and so do their data.
There’s no easy answer for some of these situations you might face. That’s ok. Part of what open science asks is to consider your options and document your decision making.
Reflect early on in your process about what your goals are and how you want to achieve them. What are your values? How do these match up?
Some of the tips and guidelines that I talk about in the webinar: (1) Documentation is so important. It’s also really difficult. Making things clearer for you and your future self will also make them clearer for others who might eventually see your code. (2) A tidy data structure will make things easier for you and easier for others to understand. If you’re not already on board the tidyverse train, it’s never too late to start. (3) Make sure you have a data dictionary somewhere that explains all of your variables. This sounds obvious, but it doesn’t usually happen because in the moment you think you understand all of your variables. But future you will not remember all of those things. Write it down. Preferably in a R Notebook (more on that later). (4) Pick a consistent and clear file naming convention early on in your project (preferably before you begin data collection). Think about the date format you use and think about the unit of analysis you will care about later and try to incorporate it directly into your filename to help with filtering and analysis later on. (5) Of course I want you to visualize your data. Descriptive statistics can be misleading sometimes and visualization is an important step in your process and is not just an end product.
The thing that ties all of this together is using a R Notebook within RStudio. R Notebooks make use of RMarkdown, a flavor of Markdown, my favorite way to write. It is a plain text file, so it’s easy to version control and easy to share, both things that are hugely important when thinking about open science. I really like R Notebooks because you can easily incorporate explanatory text alongside your code and figures/graphs are persistent across the page so you can scroll and easily refer back to something above or below where you are working. This, in my opinion, is a much better way to use R than the older way with scripts and the console.
R Notebooks can produce an html file that you can send to your colleague or friend who doesn’t have R installed and they will be able to open it up in a browser and see all of your wonderful thoughts and figures. It’s really great. You can also execute code in Python or JavaScript or D3 (or a few other programming languages) in addition to R, so it’s very versatile. There are a lot of output formats as well, including pdf, Word, slide decks, dashboards, and books. And they are all customizable. Check out the RMarkdown website to see all of the options and more details on how they work. For me, they dramatically changed (in a good way) how I do my work.
Maybe a good question to leave you with is to try and answer “What is the best way for you to work toward open science?” It doesn’t have to be a big thing; it can be a bunch of small changes over time. This hopefully shouldn’t feel too overwhelming. There are lots of us here to help.
It’s my two year insulin-a-versary! This is not to be confused with my dia-versary, the anniversary of my diabetes diagnosis which is in late December. These two dates, my initial diagnosis date and my correct diagnosis date, occurred more than a year apart from each other. Which is part of the reason why today is special for me. (You can read more about my diagnosis story here.)
It might seem strange to celebrate the day that my life entirely changed and I had to start injecting myself multiple times a day (and will have to do so for the rest of my life). But it is also the day that I started feeling relief, started feeling heard, and started really feeling better. This chronic illness had slowly been creeping up on me over years and years, taking away my energy, my happiness, and my ability to live my life. Getting my correct diagnosis as type 1 and starting daily insulin injections truly gave me my life back. I had been slowly dying, my body literally eating itself from the inside, and things were finally turning around.
What I didn’t know at the time of my initial diagnosis was that there was something called LADA, or latent autoimmune diabetes in adults, which is basically a very slow-progressing form of type 1. Before my original diagnosis I didn’t even realize that adults could get type 1, and had no idea there was a slow moving version of it1. Many doctors are not even aware of it, which is one reason why so many adults get misdiagnosed like I did, even though I presented with the classic symptoms. It was a frustrating year after my initial diagnosis and brief hospital stay, where the type 2 medications they original prescribed me worked ok for a few months but then slowly stopped helping. And I didn’t know why. I was doing all of the things I was supposed to and I was beginning to feel like utter crap all of the time again. I had one doctor blame me for not trying hard enough. It was not great. Luckily I eventually got a consult with an endocrinologist and within five minutes of just talking/listening to me, she told me I had type 1 and gave me some insulin.
Before that day two years ago, insulin had been held over my head as a punishment for not doing things properly. It really messed with me. And I think that a lot of the public also get this message (especially around type 2 diabetes), that having to inject a life-sustaining hormone into your body is a sign of weakness and failure. It is not. Everyone, every single person, needs insulin to survive. Most people’s bodies make their own. And most people have no idea how much insulin they use.
I tried hard for a long time to use as little insulin as possible. Because I had still internalized this message that insulin was bad. I didn’t eat foods that I wanted to eat because I knew I would need a lot of insulin for them and kept myself on a low-carb diet for months just because I was trying to be “good” and only use a certain amount of insulin every day. This was partly because my prescription was for a certain amount and I knew if I went over, I would run out early and that would be bad. But it was also because I didn’t think it was ok to just use the amount that my body needed for the food and life that I wanted.
I’m happy to say that I don’t feel that way anymore, but it took a long time. I also had to talk to my endo and have her prescribe more than my “average” amount per day so that I wouldn’t feel anxiety anymore about running out (which I almost did twice in my first eight months and actually only didn’t run out because I bought some extra insulin in Canada). I definitely use more insulin now than I did two years ago and there’s nothing wrong with that.
Some things that I didn’t realize two years ago would soon become a part of my life:
I have to schedule exercise into my day in a complex and nuanced way that I didn’t think twice about before
Some carbs are worth calculating for and some are not
I carb count things I see on TV without realizing I’m doing it
I hate the American health insurance system with every fiber of my being
Being your own pancreas is a lot of work and you never get a break from it
Anything can become a normal part of your day, even having two medical devices attached to you 24/7
Post-apocalyptic fiction is no longer as interesting to me as it once was because I can’t forget the fact that I would die a slow, painful death in any kind of scenario like that
I have opinions about different needle manufacturing companies (Tandem just changed the brand of needles that come with their insulin pump cartridges and I’m kind of annoyed)
This year, 2021, is also 100 years after insulin was first discovered. The 99th anniversary of the first insulin injection in a patient was earlier this week. In America, insulin is still too expensive. The list price, set by the pharmaceutical companies, is around $300 per vial when it only costs them about $5 to make it. They are extorting diabetics because we will literally die without it. It hasn’t changed in over twenty years and the price just keeps going up. In basically every other country, insulin is a reasonable price or even free. It can also be bought over the counter in most countries, which would be a huge positive change here. The prescription barrier, in addition to the financial one, is another way that insulin is not accessible here. It needs to stop. We need insulin for all and we need it now.
Also, side note: fun fact! There are lots of types of diabetes! Not just the two that you’re familiar with. There’s gestational, type 3c, MODY, and some other ones. None of them – including type 2 – are caused by eating too much sugar. ↩
Our spring semester ended a little bit ago and after having taught online for the second half of it and now planning for an online fall semester, I have some thoughts. First, a little bit about me and my position in all of this, so you can understand where my perspective is coming from. I am an assistant professor at a large public Midwestern university. I study learning and educational technologies. I am an old millennial and have seen first-hand how technology has dramatically changed during my schooling career (from early personal computers in elementary school to broadband internet in college to smart phones and social media now). I have a serious underlying medical condition (type 1 diabetes) that affects my everyday life in sometimes unpredictable ways and makes me much more vulnerable to adverse complications with Covid-19 but also has supplied me with coping mechanisms and resilience to deal with this physical distancing1 and uncertainty that we all now face. Alright, here are my thoughts on teaching (and just being in the world) in this time of crisis and how we can adapt and get through it safely.
Guiding principles during an uncertain time
My guiding principles around this transition to online were flexibility and empathy. Being flexible with myself in how I adapted the course and being ok with making changes week to week as we were figuring it out, and being flexible with my students in understanding what their needs were and how they were changing as the pandemic continued. Empathy is equally important because it’s more important than ever to create a supportive and nurturing classroom culture. And that is built on empathy and trust.
This is the fourth part in an ongoing series on how and why you should be using R, especially if you are a social science researcher or education researcher, like me. If you missed the earlier ones, you can check out part 1 (Intro to R), part 2 (R Basics), and part 3 (Data Cleaning and Manipulation). This post will go into some more specifics relating to data visualization.
There are many ways to visualize your data using R. By far the most popular (and I think robust and flexible) is using the ggplot2 package. This post will talk a bit about why and how to visualize your data and some tips and basics to using R’s ggplot2 package to help you achieve your visualization goals.
Why visualize?
There are lots of reasons why you might want to visualize your data (or rather, why you should visualize your data). It can be a useful tool at various stages of research, and depending on where you are in your analysis process, different aspects of visualization might be more or less important to focus on. The way I see it, there are three main purposes for data visualization: examining your data, showing your data/findings, and sharing your data/findings.
What question are you trying to answer with your data? How can a visualization help you answer that? Do you have a really complex data set that is too hard to easily capture with a few numbers? Are you interested in variation and distribution rather than just means and medians? Are you exploring different relationships between variables and want to see how they interact?
2018 was a really hard year for me. So much changed in my life, the biggest of which might have been moving across the country to start my dream job as a professor at an R1 university. But in many ways, that huge change was overshadowed with another life-altering change: being diagnosed with diabetes.
What happened?
Let’s go back a few years, to 2016 when I started feeling awful a lot more than should be normal. I use the word ‘awful’ because it was a fairly non-specific symptom for a long time. I was really tired and I had bouts of depression, but I mostly chalked this up to being stressed out with work and traveling a lot. I usually felt the worst right after a trip, so that seemed to make sense to me. So I told myself that in 2017 I would travel less and try to be less stressed out with work stuff. And I feel like I did those things (I definitely traveled a lot less and was generally less stressed with work-related things). But I felt even worse. My depressive episodes were worse and lasted longer than before. I was tired all of the time. Just had no energy. It was really frustrating.
Then, around November of 2017 things got really bad. I had some new symptoms: extreme thirst and unexplained weight loss. I lost 20 lbs in about six weeks even though I wasn’t eating any less or exercising any more. Something was clearly wrong. I had one really horrible weekend where I couldn’t get off the couch at all. So that following Monday afternoon (after I turned in a proposal at work) I went into urgent care to see what was going on. I’m not sure exactly what I was expecting, but mostly I just wanted to feel ‘not awful’ any more.
They ran some tests (actually a lot of tests) and had a clear answer: it was diabetes. Because my blood glucose (BG) was still fairly high (it was a bit above 300 mg/dL if I remember correctly), they transferred me to the emergency room so they could make sure it got down to a normal level. The doctors in the ER at Stanford Hospital were great and explained some of the basics to me. (Also, big thanks to my BFF Britte who was a huge help that day.) At the time, they weren’t sure what type of diabetes it was. They initially were leaning toward type 1, but they weren’t sure. After talking with some more doctors they decided to treat as if it were type 2 initially and see how that went. Type 2 can be managed (especially at early stages) with oral medications and a good diet and exericse plan. So that’s what I did.
A few weeks later I had a follow-up appointment with my regular doctor and based on some blood test results that there was some insulin in my system and me responding well to the oral meds, they concluded that it was most likely type 2. (Spoiler alert: it wasn’t. More on that later.)
I had a lot of mixed emotions around this time. First and foremost I was relieved that I had a diagnosis and that I could do something that would make me feel not awful all of the time. I was a bit scared about what this meant for my life long-term and overwhelmed by the types of adjustments I would need to make to stay healthy. But part of me was also upset at myself for “letting” this happen. It was difficult because, even though I’ve always been overweight, I always felt like I ate pretty healthy and exercised a decent amount. I explained this to the doctor that I was basically already doing all of the things they suggested I needed to do (w/r/t diet and exercise) to in order to keep it under control. Sure, I could eat a couple more salads and go for a couple more runs; but it wasn’t like I was sitting on the couch all day eating garbage. It was very frustrating, but I didn’t make a big fuss about it at the time.
I only told my family and a few close friends what was going on. Our society definitely has a stigma around type 2 diabetes and I felt like I didn’t want to bring on any unnecessary judgment onto myself. I felt like I could’ve done something differently to have prevented it and so I felt ashamed of my diagnoses and what it signified. This is obviously a huge problem and it makes me think about why it took me so long to go to the doctor when I had a good idea that was going to be the diagnosis (WebMD isn’t always wrong) and how many other people are out there living with feeling awful because they are ashamed. It’s not good.
Now of course, since I had just lost a bunch of weight, people were now constantly commenting to me about “how good I looked”. There was one exception where somebody asked me if I was “well” (and I think it’s relevant to point out that this person did not grow up in the United States), but everyone else wanted to me to know that I looked great now that I’d lost this weight and most of them then followed up with the question “how’d you do it?”. Every time this happened my stomach dropped a little bit. I wasn’t about to tell these people, most of whom were just acquaintances or work colleagues, my situation. And it was enough weight and obvious enough that I couldn’t pretend that I hadn’t noticed. So I responded with “low-carb diet” usually with some kind of either enthusiasm for how fun it is to limit your carb intake or like a resigned annoyance (accompanied with a shrug) that I don’t eat big bowls of pasta anymore. This explanation usually worked. I do feel a bit bad because, while it was not a lie that was I on a low-carb diet, my weight loss was a symptom of an untreated disease that was turning my life upside down and a low-carb diet was not really how I lost that weight. But then I remember that I don’t owe these people any information about my life and I don’t feel so bad. Also, stop asking people this question. Please. You don’t know someone’s life and there are many reasons someone could have lost a bunch of weight. And if someone loses a lot of weight very quickly, that is not healthy.
Through most of the first half of 2018 things were going pretty well. My numbers were in the range they needed to be and for the first time in a long time I felt relatively normal. My depression had almost entirely gone away and I had energy again. It was wonderful. It’s a good thing too because I was on the academic job market and I’m honestly not sure I would have been able to deal with that if I had still been ill. The timing worked out.
But then, in the summer, things started to slide a bit. My BG numbers were creeping up. At the time, I attributed this to all of the stress I was dealing with – planning a move from California to Illinois, tying up loose ends at my job, and lots of travel (including a big international conference). There were six weekends in a row from late May to early July where I was going somewhere. It was a lot. But I had most of July to recover before moving the first week of August and I thought it would be fine. It wasn’t.
By the beginning of October, I was fairly settled in my new job and location and I was doing really well with my diet and exercising a lot. I was riding my bike to my office every day and eating the healthiest I had ever eaten. And yet, my BG numbers were bad. And nothing I was doing was making them go down. It was extremely frustrating. I went to my new doctor and told him the situation. He ordered some tests and a follow-up visit in a month.
On my second visit when things hadn’t improved, he upped all of my meds and added a new one to help lower my BG. He also told me I wasn’t trying hard enough, which was not only not true but kind of a crappy thing to say to someone. I kind of pleaded with him that I had been doing everything I was supposed to, and I was started to lose weight again and it was really frustrating. Almost on a whim (he was literally about to walk out the door), he asked me if I was sure it was type 2. I said no and then, luckily, he referred me to the endocrinologist to make sure.
So, finally, in January of this year I got in to see the endocrinologist and she very quickly figured out that it was type 1. She ordered some tests just to make sure and started me on insulin. Sure enough, about a week later the tests confirmed that it was type 1. Since then, I’ve been feeling so much better. I give myself about 4 injections of insulin every day (one long-acting insulin once a day, and usually three shots of fast-acting insulin before meals). It’s been a huge adjustment but I’m figuring it out and learning a lot.
injecting some insulin
So why did this happen – the misdiagnosis and feeling good for a while and then bad again? Well, it turns out that when your pancreas decides to stop working, it doesn’t do it all at once. I’m in the “honeymoon” phase, where my pancreas is still producing a tiny bit of insulin, but it is tapering off and eventually (within a year or two, maybe sooner) it will stop completely. As that happens I will have to adjust the amount of insulin that I take to make up for it.
Type 1 and type 2 are actually very different and the only thing that really transferred across was my newly learned abilities in counting carbs (which I’m still getting better at). Type 1 is an autoimmune disease where your pancreas decides to stop producing insulin, which everyone needs to process the glucose in your body and turn it into energy. There is a genetic component, but it also just happens randomly (in something like 1% of the population). It used to be referred to as “juvenile diabetes” but that term isn’t really true (half of people with it are diagnosed after the age of 20). There is no cure and I will be dependent on insulin injections for the rest of my life. [Type 2 is when your body is resistant to the insulin that you are still producing. It also has a genetic component. It can usually be managed with diet, exercise, and oral medications and there is new evidence that it can be put into remission with certain amounts of weight loss. Some people with type 2 end up needing insulin as well.]
Data data data
There are so many numbers. And equations and ratios and graphs and trends. It’s a very good thing that I like all of those things and am good with numbers and doing math in my head. This would be a LOT harder if I didn’t. For example, before I eat anything, I need to: check and see what my current BG number is (a “normal” number should be between about 80 and 140), figure out if it’s going up or down or staying steady (this is currently a guess for me, but in the future it won’t be with a continuous glucose monitor), calculate the amount of carbs in what I’m about to eat (and also factor in the protein and fat and caffeine because those also has an effect on my BG), and decide whether or not I’m going to be exercising in the next 1-2 hours (exercise will generally lower my BG). Then, once I have that figured out I can give myself an injection of my fast-acting insulin that will balance out what I’m about to eat and keep my BG number in the normal range. If this sounds exhausting, you’re right! It is. And I have to do this multiple times a day, every day, for the rest of my life.
If my BG gets too high, I will feel super crappy and long-term high BG is associated with lots of adverse health outcomes and even death. If my BG gets too low, I could pass out or end up in a coma, which is obviously really bad as well. It’s important to keep my BG in range as much as possible.
There are many factors that can affect my blood sugar. Obviously food is the biggest one, but lots of other things make a difference as well. Exercise, hormones, the weather, and stress can all impact my BG number. Even if I eat the same thing every day, the numbers will be a bit different. Every day is a little experiment.
Soon (hopefully very soon), I will be adding a continuous glucose monitor (CGM) into my routine. Right now, in order to check my blood sugar, I have to prick my finger and use a test strip in a little device that I carry around to see what the number is. This is annoying because my fingers have become little pincushions, it takes a minute or so to do this every time, and I have to carry the pouch with the meter and supplies wherever I go if I want to do this (and, as I mentioned before, it’s good to do this before I eat anything or exercise and also at random points throughout the day). The CGM is a sensor and transmitter that I will insert/attach to my body once every 10 days or so and it will provide a blood glucose reading every 5 minutes directly to my smart phone (and watch). Amazing! This will make it so much easier to know what’s going on inside my body and how I’m reacting to the day. I will be able to see trends and do little experiments to better figure out my insulin to carb ratio and the right amount of long-acting insulin to take every day.
Science!
It’s really amazing that I’m alive. 100 years ago, type 1 diabetes was a death sentence. Then, in the 1920s, insulin was discovered and we were given a chance. The patent for producing insulin was sold to the University of Toronto for $1 so that everyone who needed it could have access to life-saving insulin. (Unfortunately, at least in the U.S., this equality of access is not a reality for many people so we still have some work to do. See below.)
It’s still fairly precarious as I need to carry around this little pen of insulin with me everywhere (I would probably not do well in a zombie apocalypse scenario), but I feel very thankful that I have a chance and, with good planning and control, I can still do pretty much whatever I want to do with my life. Hiking, soccer, and travel will still very much be a part of my life thanks to science and technology and I won’t ever forget that.
Why am I telling you this?
Well, it’s a huge, constant part of my life now and it feels weird to hide it (and I don’t want to hide it). But, really, for at least two reasons. One is that type 1 diabetes is a lot to manage. It is a 24/7 job for me to manage my blood sugars, count the carbs in whatever I’m eating, inject the right amount of insulin at the right time, and not get too discouraged or upset when the numbers get a bit unpredictable (because they will; it is the nature of this that I won’t be able to control it perfectly all of the time). And I need help from my friends and family to support me through this.
If we’re hanging out together, I need you to: not be alarmed when I give myself an injection; know what it means if I’m “low” and how to help me get some sugar into my system; understand that I might check my phone/watch a lot (I’m likely looking at my blood sugar numbers). If you’re not physically close by (or even if you are), I need you to: be there to listen if I’m having one of those days when it just feels like too much and I need to vent and to advocate for a better healthcare system in the U.S. so that people don’t have to ration their insulin because they can’t afford it.
The other reason is that this is a fairly “invisible” disease. You usually can’t tell that someone has it by looking at them (unless their CGM or pump is visible, and even then you might not know what those are for). Before my diagnosis, the only people I knew with type 1 diabetes were Stacy from the Babysitter’s Club books, the Julia Roberts character in Steel Magnolias, and one of my friend’s boyfriends in college. None of whom really taught me much about what the day-to-day would be like for this. So, I had a lot of learning to do fairly quickly. I also didn’t understand the situation with the affordability of insulin in the United States and how so many people are having to spend exorbitant amounts of money just to stay alive. To be clear, for me and other type 1 diabetics, insulin is not so much a medication as it is like oxygen; without it we will die. The fact that insurance companies and pharmaceutical manufacturers are allowed to make a profit on something that I need to stay alive makes me really angry. It costs the manufacturers about $5/vial to make insulin, the “modern” version of which has been around for about two decades and hasn’t changed in form or delivery nearly at all in that time, and yet they can charge hundreds of dollars for it (or more). The price has more than tripled in the last two decades. I have a good job and good insurance and it still costs me about $100/month for my insulin and other supplies I need (it will be more once I get my CGM). Other countries have either free insulin for people who need it or a much lower cost (something closer to $5-10/vial), so this is clearly achievable if we try.
Anyway, I’m here trying to live my best life despite this extra hassle. Your support and understanding and advocacy are much appreciated.
This is the third part in an ongoing series on how and why you should be using R. If you missed the earlier ones, you can check out part 1 (Intro to R) and part 2 (R Basics). This post will go into some more specifics relating to data cleaning, organization, and manipulation.
In my opinion, the dplyr package is a game changer for those trying to learn R. It is what motivated me from just recommending that people use R to basically demanding that my friends and co-workers switch to R. I remember the day that I finally got around to learning how to use the package’s functionality and all of the ways in which it lets you easily and clearly manipulate your data frames1. I just kind of stared at my computer screen and imagined how much better my data-life was going to be with these tools. I realized that the hours and hours I used to spend in Excel trying to massage my data into the right form were over2. Also, I wouldn’t have to decipher weird R base code anymore when trying to create new variables or filter datasets. The dplyr package and its friends make your code/scripts much easier to read which will help both you and future you in trying to decipher what is going on.
In August I moved across the country (again) for a new opportunity that I am so excited about. I have started a new position as a tenure-track assistant professor at the University of Illinois at Urbana-Champaign. Yay! I am part of a new campus-level initiative called Technology Innovation in Educational Research and Design (or TIER-ED). I have a split appointment within the College of Education; I have a 75% appointment in the Educational Psychology department and 25% in the Curriculum and Instruction department. The plan is to do a lot of interdisciplinary work across campus (e.g., with VR/AR researchers, speech researchers, and the physics department).
Cynthia D'Angelo 