Dear Friends:
Thank you for being here and for sharing my words with the people in your life! I am so grateful for the growth this community has experienced in just the past week. Your faith in me and this forum is truly remarkable and I cannot thank you enough.
Now, I want to give you an honest update on what is going on with me. I’ve alluded to health challenges for several months on Instagram and in my newsletter without sharing details. It's been complicated, and truthfully, I’ve been in denial. The idea alone of having to deal with a health issue makes me wildly uncomfortable given my family’s story, most specifically my mother’s. I watched her struggle for years, first to identify what was wrong with her, and then the long, winding journey to get her the support she needed and deserved. My mother was an uneducated, lower middle class, Black woman, so navigating the seemingly endless medical appointments, the lack of answers paired with an overabundance of prescriptions that never seemed to solve the problem, and of course the doctors who just didn’t believe her, was a formative childhood experience.
The experience of caring for and supporting my mother planted a seed of fear and distrust in the American medical system. That seed, sowed deep, has been watered over the years by the reality of systemic racism. And combined with my own experiences within the healthcare system, and the racial disparities we all saw become exacerbated during the global pandemic, that seed has transformed into a giant oak of healthcare-related anxiety.
I also hesitated to admit what is wrong with me because it is new, complex, and hard to manage. But at this point there is no hiding from it: I have Long COVID. I have been sick and in pain for most of 2024. In January, I received the latest COVID booster, and it impacted an underlying endocrine issue I’ve been living with for some time. That combination made me very sick. I worked to get that under control alongside doctors and experts from all across the country for months, then wound up getting COVID itself for the very first time this spring. I have been COVID negative for several months, but have not stopped being sick. I am exhausted, I am weak, I have brain fog and, at times, a truly horrendous headache that I thought was my most debilitating symptom, until I started struggling to breathe last month. Occasionally I also have super intense bouts of anxiety and depression, but they are thankfully rare.
The pain is unceasing. I wake up in pain, I work and take care of my son in pain, I go to bed in pain. Rinse and repeat for nine months. The tricky thing about Long COVID is it is still so new. Doctors, friends and family, and mental health experts, seem to all be at a loss for what will make me feel better, how long it will take to resolve this, or when my health will be fully restored. I know I will find a way to make my existence less arduous over time, but I have no idea how much time that will take.
Being sick has called into question my identity, my competency, my sanity. The only thing I’ve experienced that has been as disorienting as this was the loss of my mother. I am actively and regularly redefining who I am and what I need to be my best self, whoever that is today. I am someone who is accustomed to basically doing it all. I run a business, I write books, I help leaders solve complex societal problems, I run after a toddler and I bake the best chocolate chip cookies, but today I can barely do any of that. And as a result I find myself filled with a new form of grief. A grief that arises when you lose your ability to be you and it is terrifying.
But in the midst of it all, I continue to choose joy.
For me, the idea of choosing joy is not to escape the pain, or even transmute the pain into something else, but to lessen the burden of the pain on me. There is a lot I cannot do right now, but I can snuggle with Bennett while watching vintage episodes of Sesame Street (which by the way was so ahead of its time!). I can (sometimes) go out to dinner with my husband and enjoy a new neighborhood. I can sit on the porch with the world’s greatest dog and enjoy some quiet time in nature. I do not get to decide when this will end and I do not know exactly how to heal myself, so I’ve decided that joy is going to be one of my primary coping mechanisms. Joy reminds me that I am alive, I am still here, and as long as I’m here there is hope for healing.
This is what holding both looks like for me. I am honest about my fear, my rage, and my pain. At the same time, I seek out laughter and sunshine and community because I know this life is both beautiful and terrible, and sometimes you just have to focus on the beautiful parts to get by.
In these notes, I will share more about how I am accessing joy, how you can join me, and what it really looks like to hold both. For now, holding both looks like getting some much needed rest. Don’t worry, I’ve already written the next few essays for you, and I am thankful to have a team handling the posting for me so you don’t miss out, while I mostly stay in bed.
Be back soon!
xx Marisa
