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kayli 🌘

@wandering

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researcher, singer, avid reader
Disabled with Long Covid 56+ months
Long Covid Knowledge Mobilization Specialist @sfu_fhs
MA in Communication @sfucmns

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goodbye, old friend taken in Simon Fraser University by @wandering

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2 months ago

Against all the odds, I officially graduated from my Master’s and my thesis is now publicly available to read! taken in Simon Fraser University by @wandering

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4 months ago

Thanks to the generosity of the David and Dorothy Lam Foundation, my research team’s next project will be working to advance Long COVID awareness and education in emergency & urgent care settings in BC. This will be a multi-step project in the next 12 months involving research components, resource creation, and connecting with healthcare workers in these spaces. We are especially interested in connecting with people living with Long COVID who work(ed) in ED/UPCC settings in the Fraser Health and Vancouver Coastal Health regions. My inbox is also open to others holding local expertise in the emergency medicine sector.  
As indicated by the cover photo, this topic holds personal meaning for myself as someone who has also accessed urgent care and the ER for my Long COVID symptoms—particularly persistent chest pain. Over the past few years both through our research studies and anecdotally through community members we learned of the imperative need to improve medical understanding and safe treatment for Long COVID in these healthcare settings. Recently, @meactnet has announced a similar project to establish clinical guidelines for LC & MECFS treatment in emergency care settings, also responding to this community priority.  
Expressing much gratitude in advance for the knowledges shared by people with Long COVID in the community to co-create this work with us, whether through research participation or our advisory committee. Please do not hesitate to get in touch, either here or kaylij@sfu.ca ! taken in Simon Fraser University by @wandering

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5 months ago

I’m ecstatic to formally share that I successfully defended my MA thesis last week and passed with no revisions! 🎉 This event held so much symbolic significance to myself and the Long COVID community members I aim to center and represent. I never could have predicted getting infected and developing Long COVID very early in my grad school journey — a positionality that informed my approach to this work, but almost hindered me from physically being able to reach this academic finish-line. It is therefore deeply meaningful that I’ve regained enough capacity in recent years to continue LC research.

My thesis bridged the disciplines of media studies and health sciences, and analyzed the discursive choices used by Canadian newspapers about COVID-19 and Long COVID risk to certain population groups, particularly in temporal ways (Spoiler alert: overall, my dataset from March 2022-July 2024 discursively placed the pandemic in the past-tense and downplayed Long COVID). Importantly, I asked people living with Long COVID about their perceptions of these representations and coverage choices, and how they would like it to be improved. I engaged deeply with the discourses around “vulnerability“, “immunity”, and vaccine messaging.

I’m so grateful to many in the Long COVID community and its allies who encouraged me every step of the way, and for witnessing this milestone with me. The work does not end here, and I’m looking forward to sharing my study results via @covidmediaproject .

I absolutely could not have done this work without my incredible committee who invested time and energy to read my immense manuscript of 180+ pages (before references)! Thank you to my thesis supervisor Dr. Ahmed Al-Rawi, Committee member Dr. Kaylee Byers, and Examiner Dr. Elyse Amend for the thoughtful feedback and engagement with my research. Thanks to Dr. Adel Iskander for chairing.

Thank you to the colleagues, friends, mentors, and support circle that supported me online and in-person for the event! I’m looking forward to when the thesis manuscript is made publicly available online late spring. In the meantime, you can view the main findings via my defence slides (Link in bio/QR code)‼️ taken in Simon Fraser University by @wandering

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5 months ago

Another #LongCOVIDawarenessday is here, but everyday the condition is front-and-center for me in my 52+ months of daily symptoms and research work. I’m pleased to share that our museum exhibition Living with Long COVID has been extended to May 27, and will also live permanently online in the form of a virtual tour and Lookbook. For those who cannot visit the exhibition in-person, these virtual formats are vital for accessibility, as well as sharing the stories around the world. I have heard from community members how significant our exhibition has been in initiating conversations with family members and friends about #LongCOVID & COVID’s seriousness. There is still a long way to go in advancing medical education & reducing stigma, but I’m so grateful to have had these opportunities to encourage healthcare worker outreach and further validate the lived experiences of fellow people with Long COVID.

I feel strongly that data & statistics must be complemented with the real human stories of lived experience. We are the people behind the numbers, with many of us still impacted long-term from infections 6 years ago. Our condition is not rare and needs to be met with the proportional attention and research it deserves.

If you’re still reading this far, having others mask-up helps us from becoming reinfected and getting worse. I feel quite repetitive in the last 4 years 😷 it is never too late to reduce community transmission and your own risk!
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Thank you to MoV’s graphic designer Mia Hansen for the Lookbook design, and to exhibition lead Dr Rackeb Tesfaye for leading our outputs and knowledge mobilization! Thank you @melted_epiphanies for filming and editing the virtual tour! taken in Museum of Vancouver by @wandering

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7 months ago

2025 scrapbook. Not captured: hundreds of naps, dozens of bottles of Stok’s cold brew, endless fatigue, breathing problems, anxiety, tears, overstimulation from the damn bright lights, and the return of rashes & post-exertional malaise. The daily survival of avoiding infection. It was still one of the most fulfilling years of my life with research & advocacy wins, and renewed capacities in leaving the house. Grateful for the love and community that will be carried into 2026 🥂*clinks my electrolyte water* taken in St. John's, Newfoundland and Labrador by @wandering

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9 months ago

Before the year ends, I wanted to finally post a high-level recap of Long COVID Web’s Symposium this past October! I was so grateful to be able to travel to St John’s safely without infection & reunite with/meet so many wonderful colleagues & advocates there. At the time, my energy spoons were higher too.

Disclaimer: not all presentations were included due to my own capacity to summarize, and I mostly drew out the parts I found novel. While I am affiliated with Long COVID Web, they did not ask me to make this post!

*Alt-text is delayed as I am exhausted but finally enjoying a “vacation” this winter break of sleeping

#LCWSymposium #longcovidresearch #longcovidconference #longcovid #longcovidweb taken in St. John's, Newfoundland and Labrador by @wandering

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9 months ago

Our report containing preliminary results from our national survey of how people with Long COVID access and experience virtual care has officially released! (Link in bio to read it or scan QR code on slide 2). This past year I have been leading a study with a team of patient partners & research colleagues on virtual healthcare access for Long COVID. We debuted these results at last week’s Canadian Symposium on Long COVID in St. John’s, and our poster won an Impact award (more summary of this conference to come)!

Our findings continue to support the need for improving awareness of Long COVID, as well as increasing the availability of specialized services. These survey results come at a time where services and clinics are continuing to be cut across the country, despite millions more Long COVID cases projected in the coming years. We will also need further healthcare provider training of Long COVID & complex chronic disease management to operate these clinical services. Our final study output will be a national guidebook providing recommendations to improve virtual health delivery for Long COVID — and will extend to other complex chronic illnesses too.

It has been an honour and privilege to use my newfound precious energy on research related to my condition. #longcovid #longcovidresearch #longcovidawareness

(thanks @diannielimbaga for the pic!!) taken in Simon Fraser University by @wandering

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a year ago

Co-creating this exhibit with the community has been one of the most significant and important things I’ve ever done in my life. In my Long COVID journey it has been a daily struggle to get others to believe in and acknowledge the seriousness of this public health crisis. Ever since we began our research studies on Long COVID in British Columbia with my incredible team in 2023, our goal has consistently been to advocate for the Long COVID community and uplift the stories they have shared with us with their valuable energy, to mobilize for change. I hope this is just the beginning of further institutional awareness. I hope that people with Long COVID feel seen and recognized in this exhibit, and that they are not alone. Thank you to the friends, community members, longhaulers, and researchers who came out in support of our exhibit launch on October 4. It uplifted my spirits so much to have us assembled in one place for the same cause. Please listen to my colleague and project lead Dr Rackeb Tesfaye’s words on the last slides. (Recording and virtual walk through to come soon.) taken in Museum of Vancouver by @wandering

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a year ago

It’s my birthday! This past year has flown by so quickly and vastly different from previous years of my life. I’m so fortunate (and with luck) to be at a place in my health journey where I can have a daily routine and work on several Long COVID projects I’m deeply passionate about. (This selfie was taken at my usual desk where I spend a solid majority of my time.) One of these projects is my Thesis, which I previously haven’t shared many details on here about. As these results wrap up, I want to circulate them with the community & beyond, through @covidmediaproject. Before my infection, my research background was in news media analysis, and I believe we must think critically about the articles we consume, or consider what is between-the-lines & beyond-the-headlines. Anyway. My Thesis is deeply personal to me, emerging out of the lowest times of my life when I was first developing LC & the mask mandates got removed. I didn’t have any COVID-informed community back then, and reading the news praising “back to normal” was so triggering. Although at the moment it’s looking like a mini PhD manuscript, it was important for me I do this comprehensively. Thanks for being here on the journey. taken in Simon Fraser University by @wandering

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a year ago

Hi everyone, I’m extremely excited to share our team’s launch of the exhibit Living with Long COVID at the Museum of Vancouver this fall! Our launch event is on October 4, 2025, in-person & livestreamed (details on Slide 2). I am so proud of everyone on the team who have come together in collaboration to work on this meaningful exhibit—our research team, people with Long COVID in our advisory group and those who submitted photos, partners at Long COVID clinics, the super talented museum staff, and community advocates/orgs. Special thanks to Nicole Rogers, @cancovidsoc and @long_covid_canada_collab for providing pillowcases from Long COVID Awareness Day and sharing the call-out for photos back in Spring. Link also in bio for launch event registration! Slide 1: Mustard yellow poster for exhibit. Photo of person covering their face surrounded by supplement bottles, with image broken up near the top into framed square layouts. Title: Living with Long COVID. On view On view from October 4, 2025 - March 22, 2026 at the Museum of Vancouver. Logos: (MOV)museum of vancouver. Project Partners: SFU Faculty of Health Sciences, Post-COVID-19 interdisciplinary clinical care network. Institutional Partners: City of Vancouver arts culture tourism, British Columbia arts council, Province of British Columbia. Funding Partners: Pacific Public Health Foundation. Michael Smith Health Research BC. Museum of Vancouver - 1100 Chestnut Street - in Vanier Park - Vancouver - museumofvancouver.ca taken in Vancouver - Unceeded Musqueam, Squamish and Tsleil-Waututh Territory by @wandering

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a year ago

CW: the IRONY of an anti-masker attempting to crash the @millionsmissingbc event during my speech on societal stigma and the disbelief/gaslighting people with Long COVID & Myalgic Encephalomyelitis (M.E.) face, along with trying to take Cvid protections. The harassment emphasizes the points of my speech further..

#myalgicencephalomyelitis #longcovid #mecfs #MEawarenessday

Referenced in speech: @sophsoph.psd @berlin_buyers_club
Cover image photographed by Lung Liu

Thanks Wilson for filming :) taken in Vancouver - Unceeded Musqueam, Squamish and Tsleil-Waututh Territory by @wandering

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a year ago