Advocacy begins Within

The Advocacy that has become my whole personality most recently, is for myself

Photo: Bates Lane Photography

By Tess Cruz Foley

How exciting for me that my column debut is in The Advocacy Issue. I’ve centered my life around advocacy. I have created a career around advocacy as a Diversity, Equity, and Inclusion (DEI) Consultant. I realized that I wanted my advocacy efforts to be more effective in changing people’s hearts and behavior rather than dehumanizing each other, confirming each other’s biases, and justifying their acts of rage. Advocacy rights wrongs, gives a voice to the marginalized, and leads to shifts in collective values and norms. The advocacy that has become my whole personality most recently is for myself, as I navigate long-term illness in a culture that equates “hustle” with one’s worth. A culture in which I have been deeply indoctrinated.

After contracting COVID in late December 2021, I started to notice that I wasn’t bouncing back. I was more tired and less patient, getting headaches, and experiencing malaise. I couldn’t get my brain to process what others were saying and I noticed memory lapses. Once, I walked into the kitchen to make a cup of coffee only to find a hot cup of coffee on the table, which I had apparently made minutes before. I started to feel more anxious while driving. I spent days feeling faint.

By summer of 2022, I was hopeful that eating healthier and buying all the supplements would resolve my symptoms. I worked in a summer program for underrepresented youth, which I loved, but which was not aligned with what my body needed (rest) and I grew resentful of myself for pushing so hard.

That July, lab work showed prediabetes and an EEG of my brain came back “abnormal in a peculiar way.” As the neurologist continued to describe my results, I became suspicious that she had no idea what she was looking at. She told me to “rest my brain” and retest in January. Since all of this started for me after COVID, I began to suspect I was a “long hauler” (someone who is significantly impacted for several months after a COVID diagnosis.)

I joined  a Facebook group called COVID-19 Long Haulers Support. They have become my people. I learned that my abnormal EEG and the insulin resistance that lead to prediabetes are both common long COVID (LC) symptoms, as well as my headaches, malaise, fatigue, and cognitive impairment (memory loss.) I learned terms like “post-exertion malaise” and that the weird “passing out” feeling was likely caused by malfunctions in the nervous system called autonomic dysfunction, or dysautonomia.

I researched local LC clinics and asked my doctor to refer me. It took 6 months to get an appointment and was then referred to other specialists; I quit all of my volunteering ventures to rest my brain, and in time I got better. Test results in January 2023 showed a normal EEG and no more prediabetes. I was able to continue working and do the bare minimum in parenting and home upkeep. I didn’t have the energy to socialize, but life was manageable otherwise and I was hopeful to continue improving.

In March 2023, I got COVID again. All of these symptoms came back worse than before. I’ve spent day after day on the couch. The headaches are constant. The malaise is malaising. My body is weak, my brain is dumb. On better days I worry about what my future will look like. Most days I’m too tired to care. The hardest part for me is the excruciating psychological discomfort that accompanies my inability to continue life at the speed at which I am accustomed.

Through my work connecting social-emotional learning with diversity, equity, and inclusion skills, I seek to help people heal from internalized oppression. I help people with marginalized identities, who’ve been carrying systemic trauma through generations, develop mindfulness tools to release trauma and resist cultural conditioning that would have us believe we are inferior to anyone else. I help people with privileged identities become less fragile and less defensive so that they can acknowledge the truth about the imbalance of power in our culture and leverage their privilege to access the benefits of diversity.

I came to this work because I needed it. One of the main themes in my efforts to decolonize my thinking has been to resist “hustle culture.” The connection between setting out to grow awareness and resistance to hustle culture and the development of my long-term illness is not lost on me. We can cognitively understand something. We can adamantly disapprove of it. But that does not undo conditioning.

“Everything about my business, how I build it, and what I do for others, is about decolonizing our thoughts. This includes the belief that hustle is necessary to survive and is how we earn our right to exist. ”

This belief was deeply indoctrinated in me as the child of an immigrant father who came to fulfill the American Dream, but also as a child of a conservative Evangelical mother.

I grew up believing my highest purpose was to “be a good and faithful servant.” I repeatedly heard Bible verses such as “idle hands are the devil’s workshop.” As the daughter of a Mexican immigrant, I learned that all opportunities were to be appreciated and not to be wasted. I learned from my parents that productivity was the difference between a good “deserving” person and a bad “undeserving” person.  I grew up believing that I must earn my right to exist and that my worth depends on my performance.

As a single and sole parent my level of hustle throughout the past decade meant pushing through pain, injury, and illness to parent directly and to earn a living—with the ongoing assistance of caffeine and ibuprofen. I am both resentful and proud for making this life work for my kids.

My upbringing was intense, but the hustle is very deeply ingrained into dominant cultural belief systems. Competition, hierarchy, and beliefs that some people are superior to others perpetuate oppression and keep us all hustling. Lying on the couch for days and missing opportunities for paid work, volunteering, and socializing while dishes piled up and the kids eat Hot Pockets for every meal does a number on my self-esteem. I would crawl out of my skin if I had the energy.

I feel so guilty for being sick! My house is always gross and I’m ashamed that I don’t have the energy to make healthy food for my kids like I used to. My oldest son has been comparing me to his dad, an alcoholic with liver failure. We sound the same, always complain about how we feel, make excuses for being shitty parents. This burns me up. I want to say that maybe doing the work of two parents for decades contributed to the deterioration of my health. That may be true and it may not be—and it doesn’t matter. It does no good to blame this on my ex.

My mom came to live with us and I have spiraled into a mix of guilt, resentment, anger, and desperation every time I have to say “no” to something she asks of me. She says that my health is her priority, but I don’t believe her. I think everyone thinks I’m faking it.

I’m ashamed that I watch so much TV now. I used to love books; I would pour over books about neuroscience, politics, and trauma. I loved to learn and take deep dives into information. Books were my anti-depressant. I had a good brain and I loved using it. I can’t read anymore. It hurts to read. It’s hard to explain and I feel like a liar even trying to explain, but my LC comrades get it. Heck, I tried to attend an hour-long learning session recently and my head hurt so bad from just trying to process words and to respond cohesively. It’s lonely! I don’t have the energy for friendships. I very rarely make plans and when I do, I usually cancel or leave early. I have not had much to invest in relationships for over a year. It’s incredibly isolating. Navigating all of these icky feelings on top of being sick causes a cascade of irritability.

“It’s been hard work to be patient with myself as I slip further into the couch cushions. I’ve had to allow myself to rest, though I hear people called “lazy” for resting. I don’t agree with the concept of laziness, honestly. Let tired people rest. Let overwhelmed people rest. Who are we to determine whether or not rest is deserved? ”

I have had to practice the mindfulness that I preach through this experience. I’ve had to remind myself to breathe. Deeply. Slowly. Activating the prefrontal cortex that releases healing hormones and enhances my ability to retain information. I teach people that the prefrontal cortex is like a wise owl, while the amygdala, which commands the stress response, is like a tiny, barking Chihuahua looking for threats. Only one of these brain animals can be active at one time. One is clearly a better leader. Unfortunately for those in hustle culture, the Chihuahua is making the decisions most of the time.

A few years ago, I developed a mysterious rash that spread for 3 weeks. It was biopsied twice; every treatment made it worse. It was a private hell. Someone recommended that I drive to Boston to see an infectious disease specialist and I made plans to go to the ER. After arranging overnight childcare, I learned that infectious disease doctors don’t work overnight. I decided to give myself a night of respite, so I spontaneously booked a hotel room. I bought snacks and a journal and I took baths and I blissed out. In the morning, I noticed the rash was beginning to heal. I could not say for sure, but I believe that bliss initiated that process. Now that I know about the wise owl brain it makes even more sense to me.

I’m writing this from a writer’s retreat with three women I just met. Thirty minutes into the ride here I considered turning back. I arrived here a grumpy bitch in pain, but I received grace from these strangers. I walked out in the middle of more than one group session to lie down and was praised for listening to my body. I opted out of activities, attending to my most sensitive needs and weird little impulses, like putting my feet into fresh water at every opportunity. I felt accommodated and cared for. I write this on my last day of the retreat, which is also my first day in several weeks without a headache.

This has been a difficult road to navigate but I have learned to let myself rest, be alone, and love myself better. I know that my ability to advocate for others effectively depends on my ability to do those things for myself. This illness has given me the opportunity to deeply heal those old beliefs equating my worth with my productivity. It’s the hardest work, but we’ve really got nothing better to do than heal.