Back when Wordle first got going, I started collecting Wordle clones and variants. I use these therapeutically to help treat the cognitive portions of my Long COVID symptoms. They are helpful in retraining the brain with word and concept recognition and retrieval. When I first started with Wordle, each time it took a long time to find an answer. At the beginning, I’d often end up getting frustrated and using one of the Wordle cheat find a solution tools. I figured with as much trouble as I was having with word finding, even using the cheat after struggling was still helping my brain to forge those connections again. It got better over time, and now, I can usually solve a Wordle in a minute without the cheat tools.
That’s for the original Wordle, though. So, while I’ve continued with the original Wordle, and basic word finding and retrieval has improved, there are other cognitive areas where I’m still struggling, things I used to know well. For example, I used to be fluent in French, dreaming in French and writing sonnets in French. During COVID I realized I’d lost my French. There are a handful of words I can use, and maybe a couple hundred I can read, but I’m having to look things up. So I started using French versions of Wordle to rebuild that part of my brain. You see? You get it?
I’m using a half dozen or a dozen Wordle variants on specific topics to help build retrieval in a targeted fashion for concepts I want to focus on. It also provides more challenge, because the original Wordle has gotten to be fairly easy for me. For myself, I have a few I try to do each day (if I remember), and several that I rotate between, usually trying on the weekend to get in a few more. The ones I’m doing almost every day include original Wordle, Canuckle (Canadian-themed), Worldle (geography recognition by shape). Ones I do often, every week, include Foodle and Phoodle, Le Mot (a French language Wordle variant), Numberle (math-themed), Wordosis (medical terms). There are several that I’ve done often at times and less often at other times, but still usually do at least once a month. These include Chordle (musical chords), Dordle, Quordle, Octordle, Squardle. Others I attempt erratically either because they are so like something else I already do (like Lingle, which is basically the same as Wordle), and ones that are so hard for me I find I hard to make myself do them, like Semantle, Semantle Junior and Waffle. I will say, I have tried really, really hard with Semantle, but my brain just doesn’t work that way.
There are more. Of course there are, LOADS more! I’m sure there are new ones since I built my collection, but feel free to suggest ones I’m missed in the comments. In the meantime, here are >200 more, sorted by category and topic. For today, don’t break the picket line, break your Wordle streak and break your brain.
This is a question I’ve been asked fairly often throughout the pandemic, as awareness of long COVID increased, and as more people caught COVID. The past few months it’s been coming up more and more often. Now that I’m getting this question sometimes several times in a day, as well as getting lots of questions about pacing and brainfog (3 times in the past 24 hours!!), I’ve decided I really need to collect the resources I most recommend in places where they are easy for people to find and share.
This first post in this new series will focus on what we know or suspect about how to avoid having COVID turn into Long COVID. I’ve been waiting a long time for something official about this, but there isn’t a lot. There’s a lot of news articles, a little bit of research looking at the differences between people who develop Long COVID and those who don’t, and an enormous amount of discussion in the many patient support groups. I made a little infographic, and will discuss the high points in the rest of this post. (NOTE: I’m not this kind of artist, so please be kind, and feel free to make your own. I just did this because I hadn’t found anything else that does this.) FYI, I’m making the infographic open access and open source — make suggestions for updates and changes in comments to this blogpost, but if you want to modify the infographic, make a copy of the Google file. Also, remember, I’m a medical librarian and an emerging trends and technologies informationist, I am not a doctor (#IANAD).
Most Important Tip to Avoid Long COVID
The truth is that there is no way to really avoid getting Long COVID except by not getting COVID-19 in the first place. Everything else is about reducing the risk. So, trust me, you don’t want this, what can you do? Protect yourself, protect others, get vaccinated and mask up. Note also, that being vaccinated helps protect you from dying of COVID-19 or being hospitalized for it, but it doesn’t stop you from getting COVID or from getting Long COVID. It helps to reduce the risk, it is not a guarantee of safety. There is also an assumption in the general public and media that Long COVID mostly happens to “old folk,” but the data seems to show that this happens quite a bit in young folk. Not to mention that if you had COVID once, did not get Long COVID, that doesn’t mean you’re free now. If you catch COVID again (and again), each time you catch it, the risk of developing Long COVID goes up, and up. So, whoever you are, there is nothing that says you can’t get Long COVID.
The Riskiest Time for Triggering Long COVID
To be honest (again), we probably don’t actually know, but what the research articles discuss is usually three months. That may be simply because that’s a time periodresearcherslike to measure. The idea seems to be that some people recover almost completely almost immediately. Other people recover , more slowly, but they do recover. There are different definitions of what counts as Long COVID depending on where you are in the world and who counts as your authority. Here in the USA, the magic line is three months. What this means is that. you can possibly be described as having Long COVID:
if you had COVID and never got better, OR
if you had COVID and recovered mostly but some symptoms lingered on, OR
if you had COVID and recovered, but developed new symptoms and health problems soon afterwards, OR
if you had COVID and recovered, were fine for a couple months, and then BAM, new health problems happened, OR
if you aren’t sure if you had COVID and didn’t have a positive test (because you weren’t tested), but had something maybe like it, and after that find that now you are really sick all the time …
It’s messy. It’s complicated. But the simplest way to explain this has two main parts:
1. the longer it takes you to recover, the less likely you are to recover fully, and
2. right after you first ‘recover’ (as in finish the acute phase of the disease) you’re at the greatest risk of doing more damage to your body.
What to do, Part 1: Radical Rest
This deserves a whole post and a deep dive, so I’m going to keep this simple for now. The single most important thing to do after having COVID is to rest. The phrase is RADICAL REST, because this isn’t as simple as just lay on the couch and watch TV. That’s actually too hard for many people, and will make them more fatigued. Also, different groups use the phrase “radical rest” to mean different things, but for people just starting out it’s probably enough to keep in mind that whatever you think resting is, do more.
Rest extra for the first 3 months after having COVID. Rest lying down, with eyes closed, in a quiet place. Rest whenever you feel tired or fatigued. Rest whenever your symptoms get worse or stronger. If your symptoms went away, and came back that’s especially important to notice, and rest. Rest if you feel weepy or angry or extra emotional. Rest if you have trouble finding the words, remembering things you know. Rest if you feel confused or have brainfog. Rest if you feel anxious, depressed, or stressed. These are all ways your body and mind are telling you to slow down, they need a little extra time to heal. Resting tells your body/mind that you are listening, you are paying attention, it can feel safe and trust you to take good care of yourself while focusing on healing.
REST!!! If you’re lucky, it won’t be forever, just a few months.
What to do, Part 2: Fluids
Please check with your doctor or healthcare provider for this part. Some people have been instructed by their doctors to limit fluid intake or salt intake. There are health risks associated with too much of either of these. You want to be sure that what you are doing isn’t going to make things worse, so check with your clinic.
Now, why push fluids? Why electrolytes, why add salt? A significant portion of people with Long Covid (#pwLC) are being diagnosed with dysautonomia and/or POTS (postural orthostatic tachycardia syndrome). There are pretty standard ways to treat this, and they work really for for many people. The main points are to push fluids, add extra salt (either in your diet or by drinking electrolytes), and wear compression garments. Also, be careful about exercise, and consider staying laying down for your workouts. If you are just starting your Long COVID journal, you hopefully haven’t yet gotten to the point where you would need this diagnosis. The idea here is that if you try some of these strategies a little early, maybe it won’t get as bad? As far as I know, there isn’t anything testing this idea, of trying POTS strategies as prevention, but you hear it a lot in the patient support groups, people share these tips, and many (not all) find them helpful whether or not they have a dysautonomia or POTS diagnosis. Yes, it’s anecdotal, but if it’s low risk for you, then consider whether it’s worth trying.
What to do, Part 3: Pacing
The basic idea behind pacing is to not just rest, but to be able to know when rest is most important. #MEAction created a campaign to try to help people recovering from COVID or who newly have Long COVID to learn how best to do this. Their campaign is called “Stop. Rest. Pace.” That’s the simplest way to explain the idea of pacing. Many people recommend keeping a diary of both your activities and your symptoms, and then looking for patterns. Of course, this isn’t going to make it easy for you, by having your symptoms worsen immediately after you do something that makes you worse. It’s complicated by the worsening often happening with a delay, anywhere from a few hours to a few days. Like with the section on rest, this deserves a deep dive and it’s own blogpost, so for now, here are a few resources just to help you get started.
#MEAction has a Pacing and Management Guide for ME/CFS which is very helpful also for people with Long COVID. The Bateman Horne Center (famous for their research on and treatment of fatiguing illnesses) has a ME/CFS Crash Survival Guide. It’s big and long, and hard to read if you’re in the middle of a crash, but there are a lot of useful tips and tools, including flashcards for when you are too tired to explain what kind of help you need. The idea is not that you would pick up and choose a card and wave it someone for help. The idea is that someone who is around you a lot would know about these, show them to you, and you can signal which is the right kind of help for right now. Yes, things do get that bad, where you can’t talk, can’t say the words you’re thinking, can’t think.
What to do, Part 4 & 5: Do (Eat Healthy) & Don’t (Push)
It would seem like eating healthy is an obvious thing to do when you’re recovering from an illness, but of course, COVID-19 is going to make it complicated. It’s not just “eat healthy.” They’ve been finding that people tend to recover better by including high quality protein in their diet. Some people start to react to certain foods, and find it helps to eat an anti-inflammatory diet. Some people find that having sweets or alcohol or caffeine or (God forbid!) chocolate can trigger a crash or relapse. Many of us are reacting to gluten or dairy. Better to give things that can cause problems a break for a few weeks or months rather than have it be for a long time or forever. “Eating healthy” while recovering from COVID-19 is both eating things that are healthy for your body, and also not eating (or drinking) things that can make your worse.
In the Long COVID support groups, we’ve noticed that many of the people were those who either couldn’t or didn’t know how to take a break, people who have become experts in pushing through tough times and doing whatever it was that needed to be done. This includes Type-A personalities, athletes, people who work in essential worker and manual labor types of jobs, parents of young children, caregivers of any sort, people who work multiple jobs to break even, and so forth. If you are tempted to say, “But I can’t take a break!” or “I can’t afford to rest,” stop. Stop right there, and think for a moment. What’s the worst thing that will happen if you don’t rest now? What’s the worst thing that will happen if you find yourself having to rest almost constantly for the next 900 days or so (like me)? Please, try to find a way to let yourself rest. Don’t push yourself. Don’t push through the warning signs. Pay attention. Listen to your body. If you have trouble taking breaks ask people around you to help you remember. If someone offers you a chance to sit down for a minute, take it. If people want to help, let them. This is not the time to prove how tough you are.
I want to say thank you to all the many people in the #MEAction Long COVID-19 Group on Facebook who helped review early versions of the infographic, and suggest updates, clarifications, and corrections. Any remaining errors or confusions are my own responsibility.
In preparing part one (tools) and part two (strategies) of this series, I found many other resources that just didn’t quite fit in a nice tidy bundle. So here, in part three, I’m going to share some of those additional resources and tools, as well as some examples which range from achievable to awe-inspiring.
MORE ON STUDENT-CENTERED SYLLABI
“The learner-centered syllabus helps students navigate both the content and processes of a course by focusing on experiences the students will have, rather than what the instructor will do. Such a syllabus helps students understand the context and need for the course, how you personally approach it as a teacher, what the major expectations of the course will be, and how the course will unfold.”
The concept of a student-centered or learner-centered syllabus is not a new idea. It’s sufficiently standard that many educational organizations and schools have created resources to support teachers in developing content in this conceptual approach. What I’ve been focusing on in this blog series is applying newer cognitive strategies and technologies to the challenge, specifically in the context of creating a syllabus.
Any discussion of open access syllabi must include the Open Syllabus Project, even though it doesn’t (yet) supply full syllabi as independent pieces. Instead, it allows you to browse the full entries of content referenced in over (as of today) 7,292,573 syllabi, along with the value-added information of how many syllabi cite any particular item. This allows you to explore both the best hits as well as the long tail. I love that they’ve also made their code available in GitHub, for others who might want to design subsets or spinoff projects.
What the Open Syllabus Project doesn’t do, as far as I know, is separate out which of the items cited are open access and which require subscriptions or purchase. For that, I’ve included a list of open educational resource discovery tools.
See also these other open discovery tools for components to include in courses:
For collections of actual syllabi to explore, try these sources. I myself am particularly fond of FORRT, but maybe you aren’t as interested in science as other topics. Each of these collections, except Campus Compact, tend to focus on a specific discipline or domain, which I’ve tried to make clear in the list.
In the other parts of this blog series, I mentioned a few stand-out examples of the type of syllabus under discussion, but I found a lot more, and just wanted you to have a chance to skim through these as well.
The Syllabus (website) [NOTE: This doesn’t seem to actually be a syllabus, but how could I not mention it? Easily. Why not? Well, it’s not open — it costs $$ to access virtually anything of interest on the site, which is contrary to the whole theme of this series. While you’re debating about paying money, try following their Twitter and Instagram for seductive hints of intellectual caliber. Not a syllabus, but interesting.]
It’s been a while since I’ve talked about my Long COVID journey here, but this nice round number was too tempting to pass up. 900 days since I came down with COVID, and still trying to recover. Who knows? You might get another post for day 1000. I’m fairly confident this won’t be gone and resolved by then. What’s the news? I’m a lot better … and … not really. It’s still a roller coaster, still good days and bad days.
Early in my recovery I was very proactive, got a diagnosis of dysautonomia way ahead of the curve because I had the symptoms, but really because I tracked down trends in the UK and my doc listened to me, so we knew what to look for. I also had a lot of really on target help and therapy early on, for the same reasons, and was able to get into neuro–rehab in October 2020 instead of the graded exercise programs that have broken so many people. I was told that to be able to work regularly on-site I’d need to be able to tolerate 5000 steps a day without triggering a crash. By February/March 2021 I was plateaued, and not making further progress. I also kept experiencing crashes, although they were a lot smaller and less often. We decided I needed more rest time to REALLY recover and make it to the next level. And that meant HR got involved, because I needed to access my extended sick leave. [Note: “HR” here is shorthand for the specific unit involved in this oversight, not “human resources.”] By April/May 2021 I was almost there, tolerating 5000 steps a day 3 days a week. This meant I was able to walk around the block I live on twice a day, once in the morning, once in the evening. Each circuit of the block was a half mile.
I was so excited, but HR decided I wasn’t recovering fast enough, and pressured me to switch from the neuro rehab to a program they selected. The case manager promised the other program had more resources, more monitors, more tracking, more everything than what I’d been able to access. I consulted with my team, and reluctantly made the switch, only to discover it had less resources, less tracking, etc. The poor therapist was managing 3 patients within each visit slot, switching from person to person and sending gofer assistants with instructions. Within a month of starting in the new program, I was completely broken, back to ground zero, starting over. The day that triggered all the problems, I didn’t see my therapist until the end of the session, it was all just gofers, who had me do .75 mile on one machine and .5 mile on a second machine within just over half an hour. You can see the crash on this chart. (You can get your own charts like these in a Long COVID toolkit I’m putting together [next LC post], but for now here’s a link to the blanks in Google Drive. Thanks & kudos to Kim Sommer who designed the originals for me [which I’ve modified], and said it was fine to share.)
Well, that was jolly. NOT. I’d been slowly increasing my activity tolerance levels, and now it was starting over, and I’d basically lost a year. It was clear to me and my new therapist that I’d been doing better with my previous therapist, in an environment with more personalized attention, more knowledge of neurological rehabilitation, and more options for equipment. He felt really bad about what happened. We both recommended switching back, but that was easier said than done. HR wasn’t a fan of the idea, and it took some negotiations and additional testing to sort that out, in a very messy way. To try to do that, I had to return to fulltime work to get out of the HR-managed rehab system, request a new referral, get on the waitlist for appointments, and start the whole process over as if it was new. Then, when I finally was able to get back to my original rehab therapist, insurance declined to cover anymore therapy. Why? Because I’d already “completed” rehab, when I switched programs. That this was a different diagnosis had no impact on their decision, although it should have.
So, now, who’s managing my rehab? I am, myself. Doing the best I can, but, to be honest, this is not ideal. I’m basically treading water. The rest of last summer, fall, and winter, I was trying to figure out what were the warning signs of having overdone things, because the big crash reset everything I knew about my body’s warning signs. I kept triggering crashes, doing less and less, and finally found a place where I felt relatively stable and okay. March, April, and May 2022 were okay, and making progress. I got to where even the days I crashed my step counts were mostly above 1000 steps. (Remember, my step count before getting COVID was 11,000? Be grateful for what you’ve got.)
Eventually I started back to work in the office, first twice a month, then one day a week. This wasn’t because I was ready. I knew I wasn’t anywhere near the 5000/day recommended by my original rehab team, but I also felt like it was really important for my job to get back in the office sometimes. I also thought it was important to stretch myself and try new things, to get out of the house. I have a favorite seated cane now, and take it with me everywhere I go. I try to minimize the number of steps I take when I’m out, and to sit as much as possible. I try to schedule my days in the office on Fridays, so I can spend the weekend flat on my back, as much as possible. Going to the doctor just to get a blood draw a couple weeks ago looked like this.
Now, to be fair, I tried to take a business trip a few weeks before. My first time traveling on my own since the pandemic started. This was going to the Graphic Medicine conference in Chicago (which I also need to blog about!). I wouldn’t have been able to handle the trip if the wonderful MK Czerwiec hadn’t made arrangements to lend me a wheelchair and organized volunteers to help push me around. I’m still recovering, although I didn’t crash too badly after that. During the travel, I managed to keep my steps under 4000 steps a day, barely, and that was evidently the threshold to watch for, at that time.
The end of July, a month ago, there was a day I crossed 4K, and I don’t seem to have come back out of that. It’s really hard to tell what triggers a crash, and how long the crash lasts, and when you’re back out. A bad day is when I can’t sit up for the whole day. A good day is when I can, and maybe do a load of laundry or make myself dinner. Anything more than that is awesome. And I am TOTALLY working my way up to awesome! Except for the days when I feel like I just can’t do this any more. Except for that. Still, those of us in the Long Covid support groups still have our own in-joke: “I’m fine, as long as …”
The first post in this series focused on tools for creating classic syllabi from templates, and highlighted open source tools for this, especially in GitHub. New trends in syllabi creation are taking practices from open science and social media. Collaboration is the name of the game (collaborative pedagogy), along with multimedia, dynamic content, and transparency and openness (more on this last bit in part 3 of this series). These approaches are particularly relevant in light of the ever increasing financial costs associated with traditional textbooks and the new proposals from major textbook publishers to utilize NFTs as part of increasing profits from textbook resales as part of their strategy to phase out print textbooks.
New-ish strategies for approaching syllabi (because these have actually been around for a while) focus on fostering engagement through visual and graphic approaches as well as collaborations either with the students in the course, other faculty, or even the public. This can help lead course content toward similar strategies, such as open educational resources (OER), open textbooks, open science, Creative Commons licensed materials, YouTube and public-facing multimedia, student created content, student-centered learning, public domain content, and utilizing public libraries and open libraries in addition to your local academic library. While using these strategies for a syllabus isn’t the same as using them throughout the entire course, these can be ways to begin building skills and comfort toward applying these skills in a broader educational setting. These and other concepts are mentioned in ProfHacker’s post on Creative Approaches to the Syllabus; Beckie Supiano’s The Student-Centered Syllabus; and Hua Hsu’s A Celebration of the Syllabus.
There are many reasons given for redesigning syllabi in a more visual format — increased interest in the content, visually engaging, using different parts of the brain and memory for increasing retention, encouraging students to actually read the syllabus, and more. Part of the goal is to save the teacher time by having fewer students asking questions for content that actually IS in the syllabus. Including a visual approach can help make a syllabus more accessible to students with some kinds of learning disabilities, but can also be less accessible to students with visual perception disabilities. Of course, if using color, one must also consider visual color-blindness as part of accessibility. There is no one size fits all, so consider trying different approaches, and keeping a text-only backup copy for those students who don’t benefit from graphics.
What seems to be the most impactful form of syllabus collaboration for the faculty would be a toss up between partnering in public on discovering resources and developing course structures, and then collaborating with the students in the course. The #AnnotatedSyllabus trend really took off during the pandemic, with the biggest payoff coming from the actual student engagement. Put your syllabus in a Google Doc, and give the students permission to comment. Then step back out of the way while they answer each other’s questions. Doesn’t that sound appealing? Likewise, how frustrating is it for both teacher and student when the syllabus is updated, and people don’t notice the change? When the syllabus is a living document, and students are instructed from the beginning to check before beginning any assignment, that can also be powerful. Here’s a fabulous Twitter thread from the person who really kicked this idea into high gear.
Tracking the hashtag is another great way to pick up tips from all the faculty who’ve adopted this idea and watch them literally gushing over how much it’s improved their lives. Here’s another great tweet with myriad responses on how to use Google Doc syllabi to engage students, with more tips from Open Academics.
Twitter Hashtags for Syllabus Generation and Resource Discovery
Expanding on the collaborative approaches to syllabi creation, a trend the past few years is to create a hashtag for critical topics or emerging events, and collaboratively post resources on that topic as Twitter streams. What usually happens then is that a few people emerge as leaders, and will take on an official curatorial role in selecting, organizing, and compiling the content. The primo example of this was the Charleston Syllabus, which was actually published as a book from the University of Georgia Press. There have been a number of papers commenting on this concept (here’s one), and collections. I haven’t found any of these hashtag syllabi on science or medicine or related topics, but I would love to see, for example, a #LongCovidSyllabus or something like that. That said, here are a few I have found.
A few weeks ago Bryan Alexander, an educational futurist and UofM alum, posted on Twitter about a syllabus tool he’s found recently, as he often does. He preferentially posts about educational technologies and the future of higher education, so he’ll sometimes post links to syllabus tools, strategies, and syllabi he’s found online. (He posts a lot about games in education, too, but that’s for another post.) Since I know folk on campus working on creating a prototype accessibility statement for faculty to use in their syllabi, I immediately asked Bryan if this tool (by Caleb McDaniel at Rice University) includes an accessibility statement, which led to a discussion, some exploration, and then I was off and scampering through a rabbit hole, leading to this blogpost.
McDaniel Syllabus Makers
The generic form of the Syllabus Maker asks you to put in temporal specifications for the course you are teaching (year, first day, last day, days of the week the course is meeting, preferred date format). It then generates a list of dates on which the course would meet. The professor would then need to add all the other syllabus content, and remove dates that appear on holidays.
They provide links to the syllabus standards for their school: Required elements, sample statements, Title IX statement language, sexual misconduct statement, religious accommodation statement, Honor Code, Disability Services Statement / Accessibility Statement. They also offer the option for the faculty to fill in the same elements from the generic version, and then the professor has the option to download a template they can populate with content.
“Fill out the form to receive a list of all the dates when your course will meet during the specified semester. Alternatively, you can download a syllabus template (in Word, LaTeX, or HTML formats) prepopulated with a class schedule and other required information (such as Honor Code and Disability Services statements). This application uses the academic calendars posted by the Registrar to determine when classes will be cancelled for holidays or University recesses.”
Curiosity may not kill the cat, but it certainly can lead to … a reallocation of one’s time? I discovered there are in GitHub, unsurprisingly, many other open source / open code syllabus creation tools, be they called a syllabus generator or maker or builder or template or creator. These have various levels of detail, may focus on specific topics or skills, or other contextual elements that modify their utility.
There are other open source toolkits beyond Github, such as this “Writing Your Syllabus” toolkit for the hardcore geeks on writing a syllabus in R, the programming language. There are also other schools which have created syllabus generators but may or may not share the code, and which often require a login from their own faculty to access the tools.
At GraphicMedicine.org one of the first things you’ll see is the definition: “Graphic Medicine … explores the interaction between the medium of comics and the discourse of healthcare.” The Graphic Medicine exhibit at the National Library of Medicine (NLM) opens with: “Graphic medicine is the use of comics to tell personal stories of illness and health.” So, comics, cool, yay! But healthcare? That can get tough, as you know. It’s not easy having mental health challenges, a chronic condition, living with pain or a disability, just feeling like you’re different from the people around you. It’s not easy talking about it, especially when you don’t see anyone else around who is like you. There are also topics that are just … difficult … for almost everyone! (Ahem, sex?)
Engagement & Discovery
One of the superpowers of comics and graphic novels is the way they draw the reader into the story, and make content understandable that is difficult to put into words. For teaching health, using comics seems obvious, but first, does the content you need to teach already exist? To get started, here is one on teen pregnancy from Indigenous Story Studio. School Library Journal has a good starting selection, and so does the Network of National Libraries of Medicine. Of course, always ask your friendly neighborhood librarian for more ideas.
Comics are known for being engaging and accessible, but this is more true for some than others. Our culture is shifting toward visual and multimodal literacies, and comics are part of that. Helping kids learn to work with and critically examine visual content adds extra importance to the content. Brian Fies’ book, “Mom’s Cancer” is a personal favorite for examining how visuals communicate content differently than text. Some of the questions you might pose for a class or an assignment could include:
How do the colors impact your reading or support the topic? (compare the use of red in Dumb and Go With The Flow)
Where is the artist drawing your attention in this panel/frame?
How does the style communicate emotion? (Compare Haines and Brosh on anxiety)
Investigation & Analysis
Here are a few assignment or project ideas for applying critical thinking approaches to
Write a review of a title.
Is it accurate, both medically as well as telling an honest story? How do you know?
Who wrote it and why? Are they trying to inform you or persuade you or something else?
Do you agree or disagree? Do you have a family or personal experience with this topic? Does that change how you read it?
Do you like or dislike the art style? Does it work or not, and why?
Do a deep dive into a single page or frame analyzing how visuals support the message
Do the words and the images tell the same story?
Create a response to some aspect of the work being read, and provide evidence for any health claims
Original Works & Creation
Sometimes there are students who want to make their own comics. There are prompts for assignments from 1-6 panels. When it happens, I’ve found team approaches and co-creation really powerful. First, they allow people who are good with words and those good with art to collaborate and both work from a position of strength. Small groups also work well, developing a consensus story around a topic or issue. Try having two different teams draw a scene from different perspectives (eg. doctor/patient), and then discuss how they differ and why.
What do I wish …
… my doctor/HCP knew or did different?
… my parents or family understood?
… my friends understood about your health (physical or mental)?
When I [X], it feels like this in my (body, mind, emotions)
Today is 2 years since that first distinctive tickle in the back of my throat that heralded in a small way what was coming. That was the day then-President Trump declared a national emergency for COVID-19. Now, that strikes me as having a peculiar irony, but I’m not sure why, precisely. It’s almost like a gong was ringing, and I couldn’t hear it. I remember thinking, “Whatever happens, we’ll be okay. We’ll figure it out. Take a deep breath and just keep going.” It was sort of true, in some ways. And, in a lot of ways, it was really far away from true. COVID-19 and I have kind of grown up together, I guess, in a sense. Do we call this good enough?
In the Long COVID / COVID long haulers / people with PASC communities and support groups there is a special bond between those who identify as first-wavers. None of us expected to still be sick, those of us who’ve made it this far. I particularly didn’t. I looked at the research of long-term sequelae after the first SARS-CoV. It was easy to find back then, because there was so little on SARS-CoV-2. Now, I just went back to try to find that early research I’d consulted, and it’s almost impossible to sift through. For example, there are over twelve THOUSAND articles in PubMed when searching for “SARS sequelae.” If you add a date limit to find those before 2019, there are fewer than 400, and most of those were written in 2003-2005. That’s intense. Surreal. What I remember now of what I found then is that there clearly was something similar to Long COVID. Most of the folk who developed this after the first SARS recovered within a year, most of the rest recovered with the following year. By the second anniversary of the initial infection, 1% or less were still ill. I was counting on that. This whole time, I’ve been counting on that. I was determined to be one of the folk who recovered fully by the end of year one. Then I wasn’t too worried, because I still had year two before I should be worried. Right? Right. I told all my rehab folk not to worry, because I wasn’t worrying; I was going to be one of the folk who recovered.
I actually was recovering really well for a while. I’d tracked all the research and recommendations from other countries who were ahead of the USA in figuring this out. I went to my docs early on, and shared what I was finding. We got me the dysautonomia diagnosis faster than most folk are getting it even now, for those developing problems from Omicron infections and other recent varieties. I was able to get a referral to neuro-rehab pretty early, and that was showing good results for people. It was painfully slow, but it helped me make progress, too. Neuro rehab had a goal for tolerated activity levels that would have permitted me to go back to work in the office: 5,000 steps a day, 7 days a week. If I could do that, I could do most (not all) of what I was doing before I got COVID. I was at a point where I was walking 5,000 steps or more 3-4 times a week. Last May, I was looking at the light at the end of the tunnel, and getting excited about going back to work.
I’m going to skip part of the story, so I don’t get into trouble, but the short version is that I was persuaded against my better judgment (by persons involved in my treatment planning but outside my medical team) to switch rehab. The new rehab place had been misrepresented, didn’t have the kinds of resources available where I had been going, especially not staffing, and within a month of starting at the new rehab place? I’d been knocked back into a major relapse, starting over from ground zero. It was bad, really bad. I tried to switch back to my previous neuro-rehab. I finally got back in four months later, and then insurance decided they wouldn’t cover it. I’ve been left pretty much to my own devices since then. Skipping a bunch of nitty gritty details I’m sure you don’t really want to hear, I’m now back up to 2000-3000 steps 1-2 times a week, and most important, the brainfog almost completely went away last December. It was a special day when my boss said it was like talking to the before-times me. (See the opening image for my bedtime ritual. Many long COVID folk are playing games for a kind of self-prescribed DIY cognitive rehab / brain retraining.) Being impatient, I’ve been trying to go back to work in the office anyway. Once in December. Once in March. I’m determined, I’m going to get there.
As far as counting my recovery progress, I’m now counting from the relapse, not from the initial infection, so I figure I’m going to be pretty much fully recovered by this time next year. That’s the plan, anyway! Meanwhile, I had some conversations with folk who were also diagnosed with dysautonomia, and who said they were able to recover fully within, oh, about eight years. I’m seeing people with long COVID who got it after me, and have recovered. Folk teaching yoga classes, folk working on busy hospital wards, folk traveling internationally. All those folk were as sick or sicker than me, so there absolutely is still hope.
A lot of the folk who aren’t recovering weren’t as lucky with me for having access to information, diagnosis, treatment, etc. It’s just dandy for docs to tell folk they need to wear compression garments, but if they aren’t covered by insurance and they lost their job while sick with COVID, how are they supposed to get them? Ditto electrolytes. People who are now without income are being told to drink a half gallon of more of electrolytes, and they can only afford a pint or a quart a day of whatever sports drink they know probably fits the bill. No one is mentioning to them that they can make this at home, and giving them a recipe. Many folk have challenges with memory and executive function now, meaning that telling them something and pulling the brain together enough to make it happen are completely different things. Pacing is another critical concept that isn’t being mentioned to many of these folk, and over the counter things to consider trying, like anti-histamines. So, pardon me, but I’m going to drop a few (highly selected) links down at the bottom of this post for folk who aren’t sure where to start. And if anyone knows of a swapmeet / mutual-aid type of resource to share compression garments that didn’t work for the original owner, please let me know, and I’ll help spread the word.
I was asked for what I tell people before they see a new specialist for a new icky diagnosis. My top ten tips for being a patient.
1. Bring a friend with you. They’re there to support you, to validate your story, to listen and hear things you might not notice, to provide a second perspective before/during/after.
2. Take notes. At the very least, date, time, place, who you met with, what questions were asked, what answers were given, what tests were taken, and how to find the test results. (This is especially necessary if you are in a crisis situation or the emergency room, but it’s hard to do under those circumstances. Make a habit of it now, and it will be easier to do when you need it most.)
3. Who else can help take notes? Ask the person who comes with you to take notes for you. You’ll have a hard time remembering, no matter how brilliant your memory is. You may want to ask if you can record the conversation to listen to again later, but a lot of healthcare folk are uncomfortable with that, and they don’t know you well yet, so if they say “no” it’s really not a surprise.
4. Ask the doctor to write out or spell words that are unfamiliar to you. Also ask the doctor for alternate words that describe the same idea.
5. Have a list of your questions before you arrive. Prioritize the questions. Pick your top three (because the doctor probably won’t have time for more).
6. Ask people for more question ideas. If your brain is frozen and you can’t think of what questions to ask, try searching, “What should I ask” or “top ten questions to ask about” with the name of your diagnosis. You might also try searching “new diagnosis” with the name of your diagnosis.
7. Use questions to engage & build trust with your doctor. When you do research in advance, some of it will raise questions. If you bring in info to ask about, try asking your doctor questions like, “Is this good information for me? Why or why not? What would you recommend instead or in addition?”
8. Ask the right question for the right doctor. Keep in mind that you’ll probably see a whole bunch of different health care folk, and not all of them are good at answering all questions. If you aren’t getting the answer to a question that is helpful for you, ask “Is there someone else of whom I should ask this question?”
9. Read the fine print, and read your records. If you need extra time to read it or think things through, you should have the right to take whatever time you need. You also have the right to ask for copies of your medical records, and there shouldn’t be a charge, or only a minor charge. If you don’t have the time or energy to read your records (I totally get it, it’s exhausting), do you have a trusted friend who can help you review these? Mistakes creep in under the best of circumstances, and things go better when you catch errors quickly.
10. Find a patient support group with people who are kind and generous. Being angry is completely okay as long as they don’t get stuck there. You don’t want a group that spends a lot of time censoring discussion, but you also don’t want a group that lifts up misinformation. It’s okay to join different groups until you find the right one for you. You don’t have to talk. You can lurk until you feel comfortable talking. You can search the archives to see if someone else already answered your questions.
It’s been a while since I did one of these updates, and a lot has happened. And nothing has changed, or … at least it feels like that some days. Today it is 18 months since I developed the first symptoms of COVID, 500 days. It’s starting to feel like … forever. It’s funny, because I was so hopeful and determined for so long, and now I’m not. I’m much better, but part of me is giving up. The closer I come, the farther away ‘normal’ seems.
The drawing at the head of this post is one I drew during a workshop for the Graphic Medicine Unconvention. I have hand tremors now, better some days, worse other days, but the quavering in the lines is that, the tremors. It made it hard ro draw, and I wasn’t sure I could draw anything at all, because the tremors were pretty bad that day, but I decided I could draw cartoon eyes. I grabbed felt tip markers, and tried. Expert storytellers say to start your story before everything changed, when things were normal. That’s the first eye — all colorful, bright, vigorous, full of Spring and colors and energy. The second eye shows the early months, the acute COVID phase, and the first many months of the long COVID experience, when I was constantly bitterly cold (except at night, when I was burning up). I cut my hair extra short in December, but no one noticed until mid-summer, because that’s when I finally stopped wearing winter hats indoors all the time. The third eye is half asleep to show the fatigue and brainfog. The last eye, the fourth one, is closed, just a few chicken scratch black lines, to show both the extraordinary amount of time I spent sleeping over the past many months, but also the times I just wanted to die. I’m pretty sure I’m past that, or I wouldn’t be mentioning it, and let me tell you, my family is more than ready for that part to be done, but when I drew this it was still a far too vivid memory.
In some ways, I’m a lot better now. In some ways, I’m not. I’ve just been approved for a graduated return to fulltime work. I’m supposed to be back fulltime in two weeks. Cognitively, I’m ready. Brainfog is rare now, and I’m cognitively more clear than I was even a couple months ago. My cognitive endurance is much better, and when I push things too much, I bounce back faster.
Physically, I’m not remotely ready. I was almost ready in June, but then there were some problems with my being switched to a different rehab program to speed up the process, and instead it knocked me back several months of progress. It’s a long story, and I don’t want to talk about it, so don’t ask me. It’s enough to know it was bad, really bad. At the time, I was walking about 4500 steps a day. Nothing like the 11,000-12,000 I was doing before COVID, but enough that I could probably get to and from the office on public transit. I felt great. I felt like I had so much energy. I was so hopeful. After the crash in early July, I was knocked back to 700 steps a day, and I spent a month crying every day at some point. Pacing is absolutely critical for Long COVID folk like me, with predominantly neuro symptoms. Part of pacing is figuring out your warning signs. After this crash, they all changed. I couldn’t tell how to know when I’d done too much. I felt really lost. Things gradually started to return to something I recognized, but it took a long time. After two months, I’m now up to about 1500 steps a day. This is not enough to get me to the corner drugstore and back safely, but I’m working on it, and hopefully in a few more months, I’ll be back to the 4500, and able to try to go to campus again.
Okay, enough of that. It still looks like I will eventually recover to a level that will allow me something resembling a normal-ish life. I remember telling my neuro rehab therapist during the first appointment, “I want it back. My life. I want it ALL back!” I wouldn’t say that now. I do think I’ll get back to everything I used to do, just not at the same level or speed I used to do it. And there are silver linings. I used to have an uncontrollable vocal fry that made me have to stop singing, and the treatments I’ve been doing have given me back part of my singing voice. Not much, but at least I can enjoy singing in choir again. I’m grateful for that!
Overall, healthcare doesn’t know much about COVID or Long COVID, but they have learned a lot really fast. There is more coming out all the time. As you might imagine, I’ve been keeping an eye on this. I’ve been collecting a lot of clinical guides, best practices, interviews, etc. I’m going to put those in a post, but not this post. In a few days. I have all sorts of goodies to share with you!