This essay is part of the Color of Long COVID series, supported by the Disability Visibility Project.
I. The OG
Dear Mom,
Thirty years later, I finally understand.
Do you remember the year 1994?
You got sick when I was a child,
and you weren’t ever the same again.
At first, it was a cough and congestion
But as days gathered into weeks, you spent more time in bed
Why are you so tired, I asked myself.
What happened to you, Mom?
I remember you hosting Tupperware parties,
Driving in your Chevy Nova in the early 90’s.
Spreading laughter, kindness, and peace.
But all that changed when you became disabled
In your late thirties from your unnamed disease
So many asked, What happened to Elvie?
A Filipina immigrant
Who worked two jobs as a bank clerk
And a doctor’s secretary.
After you got sick,
You slept for most of the day
and couldn’t explain why.
Wake up, get out of bed
It’s all in your head, doctors said.
You’d respond in Tagalog, hindi ko kaya
“I can’t,” or “I’m unable to.”
In school, my teacher said those words were untrue
Which made me think you were a liar.
I’m so sorry I didn’t understand you.
Now I realize, Mom, that you’re a strong survivor.
Any physical, mental, or emotional effort
would worsen your disabling fatigue.
Hindi ko kaya
Was due to post-exertional malaise (PEM)
and not your effort preference.
But we didn’t know about hypermobility,
prolonged mold exposure,
Or Myalgic Encephalomyelitis (ME).
Instead, they placed you
on an involuntary psychiatric hold in 1995
Diagnosed you with bipolar and prescribed
A cocktail of anti-psychotic drugs that harmed you.
You never got the chance to complete your degree in dentistry.
Mom, you became one of the #MillionsMissing.
Thirty years later,
I now live with Long COVID.
And it feels like I’m reliving your past
With each medical appointment and doubter,
Feeling poisoned and like a prisoner.
What happened to me, mom?
So here I am, lying in bed,
Like you so many years ago.
But thanks to you and Dad,
I have the freedom to speak what’s in my head.
I now write short lines,
All I can put together through my brain injury.
I hope my words can help others,
My sons, iyong mga apo, and the generations ahead.
If anyone I know gets sick, I pray they aren’t gaslit,
but believed instead.
II. Rewind, Repeat, Remix
After you got sick, I promised to finish school
to figure out what happened to you.
When I graduated high school
I was already struggling with pain and fatigue.
But doctors and loved ones said not to worry.
When I became a Registered Nurse it only got worse.
Like you Mom, when I went to doctors,
I was misdiagnosed with depression and anxiety.
I had multiple work injuries
Because I didn’t know I had hypermobility,
Not until my late thirties!
While on the front lines at the start of the pandemic,
I was directly exposed to SARS-CoV-2.
I had to return to work after isolating with symptoms for 14 days,
Forced to push through new fatigue, pain, and non-restorative sleep.
Unfortunately, I had vaccine injuries, too.
Then Delta/Omicron infected me and
I’ve been long haulin’ since 2022.
My boys asked me,
Mom, what happened to you?
…Winter 2021, I felt like I was having a stroke,
SARS-CoV-2 ain’t a joke.
The virus invading my body, depriving me of oxygen
Like my bones were being eaten by acid.
At 2 AM, waking up my husband
as I’m gasping for air,
mouthing, “I can’t breathe”
Having flashbacks of 2020,
George Floyd
And the rise in Asian Hate
as I was on the front lines.
Wearing garbage bags as gowns,
baggy blue masks, six feet apart
Gesturing a hug to fellow BIPOC colleagues of mine.
Public health agencies didn’t tell us the virus
Was airborne at the time
How many more have to suffer and die,
Because of their lies?
Like you, Mom
I also lost my job and career;
And couldn’t advance my degree.
I’m absent as a mother, wife, daughter,
sister, auntie, Ninang, and friend.
When will this end?
I can barely move, sleep, and breathe
My mitochondria, brain, lungs,
And heart are all dysfunctioning.
During one medical visit in 2022,
I had side effects from multiple injections,
Temporarily paralyzing me.
My doctor called 911
Paramedics asked why I was masked, then remarked,
“Long…what?
You’re just having anxiety.”
The ER nurse did three sternal rubs on me,
I couldn’t move or speak but I could hear clearly,
She threatened to transfer me to the psych unit.
When the medications wore off,
I asked why she would do that
Without properly assessing me.
Even decades later,
Practitioners still advise to push through,
Ordering Cognitive Behavioral Therapy (CBT)
and Graded Exercise Therapy (GET)
At a Long COVID clinic affiliated with the hospital
where I began my career.
Like you Mom, I was eventually on a dozen prescriptions
that were taking the life out of me.
I did their CBT and GET,
Followed their directions,
And hoped they’d cure my “mild” infections
but they all made me worse.
I also said, Hindi ko kaya,
I. Literally. Can’t.
I apologize, Mom
you were marginalized and psychologized;
Oh, how I wish I could turn back time
To understand you and change your trajectory,
I’m using this second chance
to transform our family’s history.
Public health agencies didn’t tell us the virus
Was airborne at the time
How many more have to suffer and die,
Because of their lies?
III. Reflection, Radicalization, Revolution
Let’s destigmatize and depoliticize
Long COVID and complex chronic conditions.
Build systems rooted in Justice, Authenticity, Equity, and Love,
Prioritize the needs of the disabled and chronically ill
Especially marginalized communities and people of color.
Like Florence Nightingale
The Lady with a Lamp
Who lobbied for nursing reform in the 1850s
In bed, as she suffered from “Crimean fever”
Which may have led to ME
I live by her oath that I pledged during a
Blessing of the Hands Ceremony.
I keep the light flickering
while in bed and typing these words.
Why are governments repeating history?
Chronically ill and disabled people educate
About basic infection control to
Prevent COVID-19 and airborne infections.
Pleading with public health agencies to
Help stop mask bans.
Everyone is at risk of Long COVID.
We need to teach and implement cleaner air…
Why don’t these agencies care?
Mom, you received better care and treatment
when you were diagnosed with cancer 18 years later
The doctors no longer doubted your misery.
But what about PEM and ME?
Long COVID is a public health emergency.
We need to build holistic,
accessible, and affordable comprehensive centers
Identify and treat root causes, including vaccine injuries.
Many are suffering in bed and struggling to leave home,
Provide extended home health and social services.
Expedite and approve applications for social security disability,
So many are now homeless or about to be.
I thank Dad and Kuya for taking good care
and loving you unconditionally.
I’m grateful my husband and sons do the same for me
Care-partners need recognition and
gotta be compensated financially.
Ina, your mom, raised me to be silent and not question authority.
But that enabled oppression, ableism, and misogyny.
I now finally believe in you and me
That speaking our truths will help set us free.
Therefore, I’m making a choice,
to use my voice
to fight for justice
and end our generational traumas,
I hope you hear me too,
Dear Grandmas.
Thank you God for revealing these solutions,
We’re overdue for a Long COVID revolution.
Love you, Mother,
Always and forever,
J
We’re overdue for a Long COVID revolution.
Jacqueline E. Luciano (she/her) is a first-generation Filipino-American who was working as a Regulatory Nurse Consultant during the start of the pandemic until she was disabled by Long COVID and associated conditions in 2022. She is a BIPOC Fellow with Long COVID Justice, a Narrative Architect for Listening for the Long Haul: A Living History of Long COVID, and a Long COVID Advisor for National Organization for Nurses with Disabilities.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
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