Life Update: Holidays, Tech, and Remembering Alice Wong

Long Covid, MD Podcast, Episode 62. Press Play to listen

Hi friends,

I recorded this week’s episode from my car while I was waiting to pick up my daughter from her Girl Scout’s meeting. It’s nice to have enough health to take her to these meetings regularly. That wasn’t the case a year ago. I was thinking of you and didn’t want to wait until I got home to record.

This episode is about:

• Seasonal blues and scrolling

• Holiday grief and complicated families

• Aging in a sick body

• And remembering disability activist and writer Alice Wong

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1. When the clocks change, my mood does too

Daylight savings is rough on me this year.

• The good: I’m waking up early enough to see my kids off to school. That’s a big win.

• The hard: It’s dark by 5–5:30 PM. My brain interprets that as, “Day over. Time to cocoon.”

That early darkness + long COVID fatigue =

• More time in bed

• More temptation to scroll

• And a noticeable dip in mood (hello, seasonal affective symptoms)

The first step for me has been simply naming it:

“This is the light changing. This is my brain reacting. Nothing is wrong with me for feeling this way.”

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2. Doomscrolling is not self-care (even when it feels like it)

Lately, I’ve noticed I’m on my phone way too much — especially short-form video.

I recently read about yet another study showing how short-form content harms:

• Attention span

• Emotional regulation

• Overall cognitive health

As someone with significant cognitive injury from COVID, I can’t shrug that off.

I still need my phone to connect with other people with long COVID, build community on Substack and Twitter, and share information.

So instead of “no phone,” I’m aiming for more intentional phone.

From the book How to Break Up With Your Phone, I’m using this simple 3-question check-in whenever I reach for my phone:

1. What for?

   • Why am I picking this up? Is it for a particular goal or to distract me?

2. Why now?

   • Do I need to interact with my phone right now?

3. What else?

   • Is there something else that could comfort or support me better than scrolling?

You can try this too. Not to judge yourself, but to gently interrupt the autopilot.

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3. Holidays = joy + grief (both can be true)

Thanksgiving is around the corner, and my mood is heavier than usual.

I’m thinking a lot about:

• How my illness has changed relationships in my family

• Choices I’m proud of

• Choices I’m still wrestling with

A therapist once told me that holidays are the busiest time in crisis care.

This time of year holds stress, family conflict, old wounds, and fresh grief. Instagram may sell us the “perfect holiday” fantasy, but real life is rarely that.

You might be:

• Grieving the life you had before long COVID

• Grieving relationships that have shifted

• Grieving energy you wish you had

I can’t fix that for you. I can only say:

If your heart feels heavy going into this season, you’re not alone and you’re not broken.

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4. Aging, illness, and the mirror

Another honest thing: I’ve been feeling old.

Years of illness, inflammation, and reduced activity have changed my body. I catch myself missing the body I thought I’d “get back” in my 40s, after childbearing and medical training.

Instead, I got long COVID. More inflammation. More damage. More humility.

Right now I’m:

• Working carefully with a physical therapist

• Slowly reintroducing exercise

• Trying (not always successfully) to meet my changing body with more grace than judgment.

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5. Remembering Alice Wong

All of these thoughts about bodies, control, and illness led me back to someone I deeply admire: Alice Wong.

Alice was a disabled activist and writer who won the MacArthur “genius” award in 2024. She was a powerful voice in disability justice, and a community builder who welcomed long COVID patients into the broader disability community.

She died recently at 51. Her loss is being felt across the internet, and in my heart.

Two of her works I recommend:

• Year of the Tiger (memoir)

  • This book made me a better doctor.

  • It also made me a kinder, more forgiving patient toward my own body.

• Disability Visibility (anthology)

  • A collection of essays centering disabled voices.

  • Essential reading if long COVID has pushed you into the world of disability, newly or more deeply.

Alice modeled something many of us struggle with:

• She refused to be embarrassed about needing care.

• She insisted her needs be accommodated.

• She made it clear that disabled lives are valuable, complex, and non-negotiable.

Even in death, she left us a message emphasizing the power of sharing our stories and the importance of community over isolation.

Here is a place to start learning about Alice, and a place to donate in her honor:

• An essay of hers to start with: Time Magazine

• Fundraisers for her foundation and for Crips for eSIMs, a project she supported to get SIM cards to Palestinians in Gaza

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6. A small invitation for this week

As we move into the holiday season, here’s what I’m working on — and you’re welcome to borrow any of it:

• Notice when the early darkness makes my brain say “day over”

• Ask What for? Why now? What else? when I catch myself doomscrolling

• Allow grief and joy to coexist at the same table

• Offer my changing body a little more patience than critique

• Remember Alice Wong’s example whenever I feel “embarrassed” about my limits or needs

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If you want to share how you’re doing, I would truly love to hear from you.

📩 Email: longcovidmd@gmail.com Or send me a message in Substack

Tell me:

• What’s hardest for you right now?

• What’s unexpectedly helping?

• How are you feeling heading into the holidays?

I’m rooting for you to find small pockets of comfort, connection, and joy in the middle of whatever this season brings.

Take good care,
Zeest

This newsletter and podcast are for education, validation, and support. They are not a substitute for personalized medical advice. Please talk with your own licensed medical specialist before making changes to your care.