bgw for Medx
Artist's Statement: I am an artist, health advocate and podcaster who has lived with complex chronic illness, and the chronic uncertainty that comes along with it, for more than two decades. As someone juggling multiple invisible illnesses, much of my work has been about visibility, and making visible what has previously been unseen. In my attempts to seek diagnoses and validation, I have used many of the quantitative symptom tracking apps that have been available for iOS in recent years. The Instagram account, @bimpsegetsweird, is my attempt at qualitative self tracking to better capture my quality of life, which has too often been underrepresented in other self tracking data.
Below is a curated gallery of 30 images from the project, and you can read a more in-depth discussion of my considerations, process, and insights from the project in this blog post.
To see other examples of these themes, as I have explored them in my artwork, my portfolio can be viewed on bimpse.com. Last year my painting, Syndrome, was published in the Fall 2015 issue of The Intima: A Journal of Narrative Medicine.
Explore Cara's other projects for the 2016 MedX ePatient Storyteller Track
Process: I start by using the Snapchat selfie camera, sometimes purposefully breaking the filters to create a distorted effect. I then use a combination of several different apps and filters to experiment with manipulating the photo, until I get a result that feels representative of my current physical and/or emotional state. All images are created on the iPhone 6S.
Insights: In some ways this project has been as much about affirming my own experience to myself than it is about communicating with anyone else. It has been quite interesting to look back at my summer, which has been a particularly difficult one symptom-wise, and see that experience represented in a visual way over that period of time.
One of the most fascinating aspects of this project has been the response I've gotten from other people. I have gotten a lot of interesting interpretations that had not occurred to me previously. For many people the pain and discomfort conveyed in the images seems to upsets them more than it upsets me—and I'm the person who actually lives this every day.
Date Created: 17 June 2016
Migraine: 8/10 pain, 35 hour duration
Caption: "I started a separate account for my creepyweird snapchat nightmares, to explore #migraine imagery while I struggle through this #ChronicMigraine flare. Not recommended if you have seizures that can be triggered by flashing/flickering, or you're easily creeped out. Please excuse me while brain continues to melt, and I make weird pictures about it."
Reflection: This was the first time I realized I could manipulate Snapchat filters to create a very different kind of image. This was the genesis of this project, when I thought it would be migraine specific.
Date Created: 20 July 2016
Migraine: 9/10 pain, 20.75 hour duration
Caption: "Pulling into the lead at today's #HeadPainOlympics is Trigeminal Nerve with the Feels Like Someone Shoved A Knife in My Ear."
Date Created: 23 July 2016
Migraine: prodrome, 8/10 pain, 46 hour duration
Caption: "This is the face of someone who got as close to 'enough' sleep as is possible in this body. It was glorious, but there's another migraine coming on. Which is actually a perfect excuse to spend the day lounging on the couch watching the new season of Bojack Horseman on Netflix. I have zero complaints about this."
Date Created: 24 July 2016
Migraine: 8/10 pain, 50 hour duration
Caption: "I have so many thoughts about forehead lines and migraines and Botox and visible expressions of pain and some day I'm gonna write them down. That day is not today. Today, we migraine."
Date Created: 1 August 2016
Migraine: 8/10 pain, 74 hour duration
Caption: "I feel like I'm living underwater the vast majority of the time...
'One early morning, driving to the hospital, I saw a number of able-bodied, energetic runners progressing along Fullerton Avenue toward the sunny lakefront, and I had a strong physical sensation of being in an aquarium: I could see out, the people outside could see me (if they chose to pay attention), but we were living and breathing in entirely different environments. Isabel’s illness and our experience of it had little connection to, and even less impact on, their lives. Teri and I were gathering heartbreaking knowledge that had no application whatsoever in the outside world and was of no interest to anyone but us: the runners ran dully along into their betterment; people reveled in the banality of habit; the torturer’s horse kept scratching its innocent behind on a tree.'
- From 'The Aquarium,' an essay by Aleksandar Hemon about his experience during his young daughter's rare brain cancer. It was published by The New Yorker in 2011. I was introduced to it last year for the Columbia University College of Physicians & Surgeon's Summer Institute in Narrative Medicine, co-hosted by the American Medical Student Association. I think about this passage often during my days as a chronically ill person."
Date Created: 2 August 2016
Migraine: 7/10 pain, 32 hour duration
Caption: "It's not all doom and gloom. My life is full of bright spots and moments of effervescent joy, excitement, and love. It's also full of pain and discomfort, and literally nothing has gone according to plan. But that's life, right? We contain multitudes. ¯\_(ツ)_/¯"
Date Created: 5 August 2016
Migraine: 8/10 pain, 74 hour duration
Caption: "Trips into the city two days in a row, involving heavy stress and extreme physical exertion. Heavy and extreme for me at this point in my life, anyway. I often forget how limited I am, until I attempt to do many things "normal" people wouldn't think twice about.
Funny to think I used to take the train every day, commuting three hours round trip, including walking the width of Manhattan to and from work on either end of an eight hour work day.
I am so relieved to finally be home, even though everything hurts and I'm dying. Shout out to modafinil for making yesterday and today possible. Goodbye forever, or at least the next couple weeks it will take me to recover from this. Jk on the forever part, but this is gonna leave a dent in my quality of life over the next few weeks for sure. That's not pessimism, you just finally start learning this after a while. Resistance only delivers me further up shit creek. I am learning not to resist the worsened symptoms and pretend I feel better than I do. I am still learning to be nice to myself, because being a jerk about my body is a fruitless endeavor. These things take practice. These things take time."
Date Created: 5 August 2016
Migraine: 8/10 pain, 19 hour duration
Caption: "Sometimes a nice highlight of orthostatic intolerance is the near-euphoric moment you finally get to lay down after being upright too long."
Date Created: 9 August 2016
Migraine: 8/10 pain, 24.5 hour duration
Caption: "My eyes and brain still really hurt from yesterday [I'd been to the eye doctor], but I did a load of laundry and finally finished writing a story that was due at the end of last month, so maybe I'm actually having a really good day even if I feel like a garbage fire. You can come hear my tell the story at The Story Collider's August 16th show, 8pm at The Wild Project in NYC (195 E 3rd St., New York, NY)!"
Date Created: 13 August 2016
Migraine: 9/10 pain, 28 hour duration
Caption: headache hashtags
Reflection: This was the day I learned fellow EDSer, patient advocate, and friend Jess Jacobs died. I already had a migraine, but it got turned inside out and upside down from the news. I cried a lot that night, which is a recipe for migraine disaster.
Date Created: 15 August 2016
Migraine: 8/10 pain, 52 hour duration
Caption: "Thinking about loss and grief and fear and guts and tenacity and laughing at the darkness tonight. It's always sad and scary to learn we lost someone in our patient community; it's something else entirely when that person was an indomitable harbinger of change in the system that failed her, someone I actually knew and wanted to know more, and someone who the healthcare world really really needed. Living with POTS and EDS is scary because so much is unknown and unbelieved, and you spend a lot of time wondering if this is possible because sometimes (too many times) it is.
In losing @jess_jacobs we not only lose a tireless advocate, but also a boundless beacon of support and friendship. She makes me want to channel her spirit in all that I do in my own care and health advocacy. I am terrified and furious that her experience plays out among millions of complex patients, myself among them. But she knew the system and its horrifyingly absurd faults unlike anyone else, and still kept striving to make it better. Even in grief, I am invigorated to keep striving too, for her and for all of us. My heart is with everyone mourning the loss of #unicornjess 💜🦄.
If you work in healthcare or you're a patient or just a human being, take some time to read her blog. She had so much to teach us, and spoke on the unique horrors faced by those of us living with complex/rare/rarely diagnosed conditions. She had a deep understanding, from the inside, of what her experiences illustrated about the system as a whole, and was a very literal genius. She was also funny as hell: jessjacobs.me."
Date Created: 16 August 2016
Migraine: 8/10 pain, 36 hour duration
Caption: "The storytelling show went really well! I didn't even barf! And people laughed throughout my story, which helped! Good for a first try, definitely. It took a lot for me to be able to get there and do it, though. I'll also be feeling the consequences of it for a while, but I controlled for the factors I could, and that helped a lot.
My partner drove so I didn't have to worry about driving and could jump out while he parked if we got there kinda late because of traffic. I decided driving was the best way in either way because I'd have to walk less and be air conditioned more. Him driving let me take enough Ativan to keep me from shaking too much, which also was helpful. My tremor can get out of control and loops in my vocal chords when I'm nervous, and then I get more nervous about all the shaking and how weird my voice sounds, which makes it worse. With #POTS in mind, I wore my waist high super hero compression pants, kept suuuuuuuuuper hydrated, and beta blockered up. I also requested a chair onstage and was able to tell the story working off my notes, instead of forgetting everything the moment I sat down. That really helped also. I only really lost my place and couldn't remember what was next one big time, which felt like it took nine minutes but was probably more like 15 seconds.
But I did it! And I stuck the landing. And all the drugs had me relaxed af as soon as I got off stage. But as the adrenaline started wearing off on the trip home, the pain set in. I hadn't been aware of it for hours, and I didn't even realize! Adrenaline is a hell of a drug, even when you've taken a bunch of other drugs to cancel it out. Everything hurts and I'm dying, but I packed instant ice packs in my bag because daytime me is so smart and it made the ride home so much more tolerable. Also we had amazing traffic luck today, and for that I am most grateful. 🙏🚗🚦"
Date Created: 18 August 2016
Migraine: 8/10 pain, 19 hour duration
Caption: "I'm feeling slightly more alive today after an exceedingly painful day yesterday. Slept 12+ hours last night, but still not enough (it's never enough). I keep saving these gift certificates I have for float therapy for a day "when I really need it," except when those days come I can't get myself there. If you could come get me and transport me in a cozy cocoon to the place with the isolation tanks, that would be great. 😅"
Date Created: 19 August 2016
Migraine: 8/10 pain, 43 hour duration
Caption: "Got the first hints of the end of summer driving up the Palisades Parkway today. The sun was dipping into the tree line, earlier, which sent flashes of light through the breaks in the leaves. Beautiful, but it triggered a migraine that really split my head open."
Date Created: 21 August 2016
Migraine: prodrome, 9/10 pain, 38 hour duration
Caption: "Got ready for the party, got too tired, had to lay down before leaving for the party. Not exactly a disco nap--a disco lay down maybe? A BBQ lay down?"
Date Created: 23 August 2016
Migraine: prodrome, 8/10 pain, 74 hour duration
Caption: "An unsafe ingredient (not sure what exactly) made it into the sandwich I had at lunch and now I feel as if a wild animal has taken up residence in my gut and is eating my intestines for an afternoon snack."
Date Created: 27 August 2016
Migraine: 7/10 pain, 15.5 hour duration
Caption: "I got enough done today to be very satisfied, even though it wasn't much at all, even as The Migraine descends. Also, I got to hang out with dogs, so 😌"
Date Created: 30 August 2016
Migraine: 8/10 pain, 27 hour duration
Caption: "Been confronting mortality on an even more intense basis than usual lately for reasons as terrible as losing #unicornjess and as whimsical as getting to watch and discuss Bill and Ted's Bogus Journey for another upcoming episode of #KeanuClub.
I woke up feeling especially dead this morning, but managed to get my brain going enough to actually get some brain things done. I spent the entire afternoon working on getting my Healthcare Proxy, Living Will, death care and digital estate plans in order. This is something I've been planning to do for years, and it feels so good to finally have it done. At least, almost done anyway. I still have to talk it out in more detail with my proxy and sign the papers, which is probably the hard part, but I'm okay with it.
I'm hoping to produce a podcast episode about this process, but we'll see if that happens. I get so little brain juice these days. This is something no one wants to think or talk about, but it's important. I would say it's especially important for those of us living with chronic conditions, but any of us could get hit by a bus tomorrow ¯\_(ツ)_/¯ so i like to keep it #DeathPositive and talk about it as much as possible."
Date Created: 2 September 2016
Migraine: 7/10 pain, 40 hour duration
Caption: "Thank you insurance overlords, Botox treatments were finally approved. It only took five weeks, but the approval came through 🙏 Such welcome, and frankly unexpected, news.
Many people are really appalled by the amount of time I spend with a migraine, and like yeah, you probably should be. But the assumption is so often "how could this be?! There must be something that works!" Most people are horrified by the thought that there might not be, even though for many people with all kinds of conditions there is nothing. For a couple of years, I was lucky to find something that "worked"--at least when it came to my headaches. But thanks to a complicated set of boring circumstances, I haven't had a Botox treatment since January.
Botox "worked" in combination with a number of other things I take/do/am every day. It's not that these treatments even get me to a place where I'm migraine and/or headache free. It works more like turning the volume down on them, which when you have a migraine every day is a delightful improvement. Because my headaches are complex and involve more than just migraines, even if these treatments work as well as they did during the first two years (and there's no guarantee they will), I will still have a headache every day. Less so, hopefully, but still. Even if my combination of treatments, lifestyle changes, diet, and avoiding known triggers are all working exactly like they are supposed to, I will still have pain. Even when I'm doing everything "right." And if it's not head, neck, and/or face pain, the rest of my body has plenty to spare. If I did not accept this reality, I would have gone mad a long time ago.
Botox will (hopefully) be just one knob on a complicated board of sliders and switches and knobs and system of pulleys and levers and sheer luck and barometric pressure that help me take more control of my body. So let's hope this works, again, and fast! I'd love to reclaim a little more of my time and brain space.
[Treatment is intensely personal and different things work for different people! This is just my own experience with one treatment that is definitely not for everyone!!]"