My primary symptoms are fatigue, anxiety, depression, brain fog, difficulty sleeping, and difficulty eating. They come and go. One day I’ll spend all day in bed, not asleep, just exhausted and miserable with my mind racing. Imagining what I would do if this were my new normal-if I couldn’t work or support myself. I know fully well that this is catastrophizing, and I would be ill advised to trust my thoughts in these moments. And yet they are so very convincing.

Then the next day I feel energized and work out and go dancing. The next day I can hardly eat. One night I tried to eat macaroni and cheese (my go to comfort food) and couldn’t swallow one spoonful. I was hungry and could still taste just fine, my body just wouldn’t eat.

Relapsing and remitting is a seemingly technical phrase. It is part of the definition that the Office of Long COVID commissioned NASEM to write. I can now appreciate that it is a horrible way to live. I have to cancel plans and move appointments. I’m hesitant to plan anything or allow myself to be excited for upcoming events. I’ve started telling people “I’ll see how my energy is” to mentally prepare them that I may not be able to keep my word.

My doctor has no good answer for me.

Meanwhile, just months after being RIFed (the acronym for how thousands of federal employees lost their jobs through a Reduction in Force), I launched my own practice in the healing arts. Then I could no longer work. I had worked for the federal government over a decade and never imagined starting my own business. Working in public health for my whole career taught me that there really is no “safety net”. Nobody will catch you if you fall. As a collective, we are okay with allowing people to fail. I really don’t want to fail.

I am a spiritual practitioner. I meditate, I move my body, I connect deeply with myself and others to cultivate and share love. When I am well resourced, I am strong and confident and happy and outgoing. I fill my life with activities and people that bring me joy. When I am exhausted and anxious and isolated and my thoughts are not very nice, it’s really hard to keep doing the very things that nurture me. When I lose sight of my calling the path forward becomes blurry.

And yet…I have had glimmers of hope. When I focus I can bring my awareness to my heart beat, or the energy pulsating inside me, and I know all is well. My thoughts fade away, the anxiety dissipates and everything becomes very quiet.

When I talk to my friends and my family and they simply allow me to sob and remind me of my purpose, things come back into focus.

When I listen to Elizabeth Gilbert and Tara Brach. When I read Suleika Jaoud and Christopher Wallis. When I see Jon Batiste in concert. When I am held in a tango embrace. I am reminded that it’s all love. Every breath is beautiful.

When I do have the energy to see clients and they express their gratitude for the peace they feel in their bodies I am reminded of my purpose.

And lately, when I have just enough presence of mind to practice surrendering, I am able to fully allow the depth of pain and sadness that live inside us all to flow through me. And then I discover what is on the other side. Actually, what really happens is that I am reminded that it’s all love.

I’ll probably get better. I probably won’t fail. And if I don’t get better and I do fail I’ll find a way to make peace there too.

Delusional Optimism (November 6, 2024-January 21, 2025)

Looking back in my journal to November 6, 2024, I find reflections on how hard it was to work for the federal government under the first administration (2016-2020). I also find a commitment to be a love warrior. To stay, to lean in, to find common ground, to embrace the reality of the situation and continue to do my best. There is also a desire to find a new job because I love my work so much and was burning myself out.

During the first administration, I worked for HHS’s Office of Global Affairs (OGA), and then at the FDA’s Center for Tobacco Products (CTP). At OGA I learned what happens to the priorities of the prior administration after a transition of power. I had been working with our Cuban counterparts to strengthen health diplomacy under our nations re-establishment of diplomatic relations. That ended. My work then turned to focus on the Venezuelan regional health crisis (i.e. the spread of measles and other diseases in the region as the Venezuelan health system imploded and migrants went unvaccinated and untreated, overwhelming neighboring countries). Alex Azar, HHS Secretary, was personally interested in the issue, and it became the major focus of my work. The administration was also interested in lowering drug prices and willing to use tactics, like price negotiations, that seemed more palatable coming from a republican administration. When I transitioned to CTP it was under FDA Commissioner Scott Gotlieb, who took an aggressive approach to regulating tobacco products, including a commitment to lower the nicotine in tobacco products to non-addictive levels, likely one of the most impactful regulatory actions the agency could take to decrease the death toll of tobacco products.

All this is to say, I thought, maybe it would be okay.

From November to January, I did my best to maintain some form of delusional optimism. Most of my colleagues were bracing for the worst and tried to tell me, but I did not have the emotional capacity to engage.

The Writing on the Wall (January 21, 2025-April 1, 2025)

Everything changed after the inauguration. The DOGE e-mails started coming. They were mean and caused fear, division, mistrust and confusion. The instructions were nonsensical, leadership was scared and nobody provided clear instructions. Every day we strategized and re-strategized. Reading executive orders and leadership memos to try to understand what it all meant. Doing our best to keep the work going, not break the law, to protect our team, to maintain our commitments, and resist the temptation to give up. Everyone was confused and scared. Offices were being shuttered and people sent home with no warning. It was an emotional rollercoaster. It was exhausting.

Nominee Kennedy promised to continue to support Long COVID work during his Senate confirmation hearing. We held onto this promise tightly. We saw Long COVID as an area of convergence-an opportunity to fundamentally change how we engage with complex chronic illness, right in line with the administration’s focus on chronic disease.

The firings started in February with the probational staff (i.e. those with less than a year in the government). Our newly established Federal Advisory Committee on Long COVID was abolished by name via Executive Order on February 19. We had just spent that past year standing it up. We held a call with the members to explain. It was meant to be for them, to apologize to them that we couldn’t keep the work going, instead they let us know how much they appreciated everything we had done-our whole team left in tears.

On March 12 I was informed that the White House was ordering our Office to close. We were a tiny, insignificant office, running on fumes, why did they care so much? We put together a process to close out the work, which was then leaked. The silver lining is that we had the opportunity to say goodbye. Most people did not have this luxury.

We had senior leadership meetings every day. They ranged from sober to somber. Everyone was doing their best and it all sucked. See the thing is, we all care so much. We are professionals who worked there because of the love. We love people and want everyone to be healthy, to thrive. How many times I tried to will myself to stop caring, to just turn it off. I never succeeded. And I don’t think anybody else did either.

My Soul’s Calling (Not time bound)

It was becoming abundantly clear that the most likely outcome would be losing my job. I began to allow myself to consider what I truly wanted. What was my soul’s calling? What are my most valuable gifts that I must share with the world? I allowed myself to think big, to think wildly.

Since high school I wanted to go into medicine, which later shifted to public health, because I wanted to help people live healthy and happy lives. I did my master’s degree in public health policy and had been working in the field ever since. Concurrently, I was a deeply spiritual person, a practitioner of yoga, meditation, and dance. And the experience of having cancer during the pandemic cracked my heart open in a way that would no longer allow me to tolerate living a small or inauthentic life.

I knew that love was my most abundant and valuable asset. All I wanted to do was cultivate and share my love and help others do the same. By the end of March I had committed to this path, regardless of what was about to happen. I was determined to combine all that I knew from my professional and personal expertise to do the most good in the world and earn a living doing it. Just that, no big deal.

Limbo (April 2-July 26, 2025)

On April 1 tens of thousands of HHS employees received RIF notices (i.e. we were being fired). It was a relief by the time it finally came. Since college I knew I would work “within the system”. For the past decade this meant working for a federal agency to promote policies that could help people live well. I loved it and it was hard. The bureaucracy, the partisanship is death by a thousand paper cuts.

Now I was no longer part of that system. Well, kinda. We were placed on administrative leave that was challenged in the courts and ended up lasting until late July. We were still receiving our salaries (which was nice) and still beholden to ethics and communications restrictions. It was an awkward uncertain time. Difficult to plan. Some people were called back, we still didn’t know what would happen.

Regardless, I launched into preparations for my new life. I meditated, I traveled, I trained, I danced. Above all else I allowed myself to dream and create.

The Beginning of My New Life (July 27-today)

I finally received notice that I was no longer employed by the federal government. The next week I saw my first client. I am a practitioner and guide of spiritual intuitive embodiment. I utilize love alchemy and sacred intimacy, drawing on the power of grief and love to support individuals on their path of healing and personal transformation to move towards inner union and universal love. That’s a lot of words. Most of them vague. I plan to share more of this work in the time to come. For now, it’s just me living my most authentic life, doing everything I can to heal myself and supporting others on their path.

My whole career I worked at the macro level-from global to federal, a top-down approach. To impact the community level and ultimately the individual. Now I work at the soul level, bottom-up approach. Working with the individual, to impact the communal, and eventually universal levels.

There is nothing I would rather be doing. I can’t believe this is my life. Also-it is terrifying.

Five years later and most of us just want to move on. Many of us want to forget. Some of us want to believe it didn’t happen. As a country it feels like we are trying to suppress it. To dissociate so we don’t have to face the pain of what we all just went through. To go back to how it used to be.

People living with Long COVID remind us that we cannot go back and we must not forget. Because it did happen and it’s still happening. 1.2 million people in the U.S. did die. Tens of millions are suffering from Long COVID and all of us are in some way or another dealing with the aftermath. We can never go back to a time when this did not happen. We can only go forward.

I was diagnosed with breast cancer in July 2020. My experiences of cancer and COVID are intimately intertwined. For a long time, I wondered when my life would go back to normal. Then I finally realized that my life would never go back to how it used to be. It was impossible to go back to a time before I had cancer. Before COVID. Once I realized this, everything changed.

Once I realized this I knew in my bones that the only way out was through. And if I could go through the pain and infuse it with love then I could come out the other side more whole than ever. Going through it alone is hard. Doing it together helps.

I once took part in a communal grief ritual. I didn’t know I needed to grieve anything and while in it I wasn’t exactly sure what I was grieving. But tears, pain, and sadness poured out of me until I felt completely empty. All around me people were crying and raging in their own way. I didn’t know what any of them were grieving for and it didn’t matter. Then we all started to come back to ourselves and then we danced. I filled the empty cavern inside of me with movement, joy, connection, love, and the sweetness of being alive in a body.

Unprocessed grief will come out sideways if we are unwilling or unable to metabolize it, to integrate it, to move through it. The collective grief of the pandemic is already coming out sideways and will continue unless we choose to grieve together and move forward in love.

In America there are some traumas we are more willing to remember. The National Mall is full of war memorials to honor those who lost their lives fighting for the ideals of American freedom. In New York City, in place of the twin towers there is now a monument that reminds me of the gaping hole in our hearts created by loss. 9/11 remembrances call on us to never forget.

A few months back my mom visited and we went for a walk on the National Mall. The instant we walked into the Vietnam war memorial I started crying. I had been having a normal conversation with my mom and it just hit me. I have no personal connection to the Vietnam war, but I do have a human connection to suffering. The act of remembering, and being around others who are remembering, touched my heart.

People living with Long COVID remind us that we cannot go back and we must not forget. We can only go forward. And if we are willing to move through the pain and grief as a nation we have the potential to learn and grow. We have the potential to live up to those lessons we thought we could learn in the brief period when we were all in it together.

And we must not abandon those with Long COVID. We do not understand Long COVID. We don’t know what it is doing in our body to wreak such havoc. Long COVID is a hard and complex thing. It comes and goes, it shows up in different ways for different people. In America, when we put our collective effort into something we can surely achieve it. We must commit to grieving the loss of the pandemic so we can commit to solving the challenge of Long COVID. If we refuse to do this and insist on moving on and putting it all behind us, we will abandon tens of millions of people and forgo the opportunity to fundamentally transform our understanding of the human body and complex chronic conditions.

For the brief moment when we were all in it together we were willing to stay home, wear masks, and get vaccinated for the collective survival of our species. Then it splintered. The most optimistic interpretation I have is that our love of life and our desire to be connected to each other was so strong we couldn’t deny it.

Today most of us who survived now have our lives back, have our freedom back. We can gather with loved ones, feel the energy of crowds, and travel across the globe.

People with Long COVID also want their life back. They want to move their bodies. Think clearly, learn, produce, and be creative. They want to spend time with friends. Travel to see family.

My deepest desire in this moment is that we grieve together and our collective love of life and primal desire to be connected to others be the driving force that shapes our new normal.

Thank you to everyone living with Long COVID for being our collective memory. I am sorry you must carry this burden, but I am eternally grateful for you.

Note: Since 2022 I worked with a team that coordinated the federal response to Long COVID from the Department of Health and Human Services. I was the Deputy Director and creator of the Office of Long COVID Research and Practice. We worked with hundreds of federal colleagues, patient advocates, clinicians, researchers, and public health professionals to find solutions to Long COVID across all aspects of life. In April 2025 the office was abolished, and my position was eliminated as part of the federal Reduction in Force led by the Trump Administration.

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