We’re entering into the fourth week since California ordered its nearly 40 million residents to stay home and practice social distancing due to the COVID-19 global pandemic. It’s been an exhaustingly long month. California was the first state to take the aggressive stance in trying to slow the virus by issuing the Safer at Home order and prepared for the virus to hit the state as soon as it saw what was unfolding in New York City. That was only a month ago.
My husband and I were a few weeks into officially living in Los Angeles when the virus hit and we were forced to go into isolation. We moved into our apartment at the beginning of March after spending the previous few months living at my mom’s place in a suburb about 40 minutes outside of the city. We were eager to get settled into our new place and to finally get acclimated that we jumped into a routine quickly. We had about two full weeks before the isolation went into effect and to say I was devastated would be an understatement.
I had just started getting adjusted to working at a new co-working spot I’d been looking forward to hanging out at. It had a gorgeous view of West Hollywood and in our staff meetings on Zoom, I’d always be sitting behind a background of palm trees, hills, and buildings behind me. It was a swoon-worthy sight for someone who’s been enamored by L.A. for my whole life. I’d then spend the other half of my work week with the dogs at our apartment in our cute and quiet neighborhood. My health was stable with the ability to sustain my energy for longer periods throughout the day. I had a clearer sense of my triggers and how to navigate them. I’m not perfect and the down days were still rough, but I had been managing fine and just had the desire to get back to the life I put on hold in 2018.
By the time I was diagnosed with systemic lupus erythematosus (lupus) in October 2018, it was already difficult for me to leave the house, let alone get out of bed every morning. I had periods where I stayed indoors all day, only having enough energy to sit up and watch TV/listen to music/listen to a podcast. Even talking for longer than 10 minutes was hard making communications with anyone outside of my partner challenging. I just didn’t have the energy to explain multiple times as to why I was so tired. I can’t explain it to you – that’s why I have lupus. And no I have no idea why I have it. Believe it or not, illnesses just happen and often we have no idea why. Many scientists believe that lupus develops in response to a combination of factors both inside and outside the body, including hormones, genetics, and the environment.
My mind and body were constantly at odds with each other and every day was different. To exercise my mind, I tried playing games on my phone but would get too nauseous from all of the hand-eye coordination my brain had to manage. My brain would then keep me up many nights with insomnia as the headliner on most, leaving my body wrecked – sore, achy, stiff, and utterly debilitated – every morning. It was a LONG-ASS year of this war waged on my body with very few defenses.
I struggled with grief. I mourned and longed for the old me. My depression came back with a fierce vengeance, sitting with me on the many days I was alone at home, providing a familiar comfort. Loneliness can be painful.
This moment has been frightening for many people, at the least stressful for others. A new kind of stress. Who has ever prepared for a pandemic? It’s unprecedented! It’s absurd! How could something like this happen to us?
I repeated those same thoughts in my head at the beginning of my healing journey. How could I have let this happen? I should’ve been more careful, ate more vegetables, less processed food, relaxed more, this type of thing doesn’t happen to young healthy people like me!
What I eventually learned after months of tormenting myself and then gradually getting back on my feet is that life is simply a series of decisions. Nothing is in our control. Even the most trusted parts of ourselves – our bodies – can turn against us. I was under the belief that if I just got my life in order, that I could get back to my old self when instead I was working towards a new version of me. The version that is here today! This version of me is still learning what it means to move in this world with all of these limitations that are, unfortunately, invisible to most.
But once I made this shift in my state of mind, it became clear to me how this new version of me was going to survive, operate, and hopefully thrive. It’s where I’m at now and for anyone that is reflecting on how they’ll make it out of this period in one piece because honestly, I know the feeling, I come with this offering of a resilience practice I cultivated.
1. Give yourself permission to rest. The “sleep when I die” narrative oozes of capitalism and I am consciously challenging it daily. It’s hard to not feel the pressure to be producing lots of work now with all the “free time” you have, but I know that the more rest I have the more present and intentional I am about the energy I allot for things, like talking to loved ones, working on a project, reading, etc.
2. Set a routine. I know this is hard to do when the routine you’re likely accustomed to includes leaving the house, but this critical time calls us to be creative with our circumstances. If you’re working from home now, try to follow the same routine of getting ready for work. It may feel silly but as someone who has been working from home for the last 8 months, setting a routine helps with focus and can keep anxiety at bay.
3. Create a ritual. During the first few months of recovery, I would wake up each morning to meditate and journal. I don’t have a religious practice but similar to worship, by setting an intention to be still and reflect each morning, having a ritual in place clears my mind in ways that supports focus and calmness throughout the day.
4. Practice mindfulness. When’s the last time you noticed everything about what you ate from the texture, smell, feel, to how it looks on your plate? When’s the last time you became aware of all your senses during a walk around the neighborhood? Especially during times of stress and anxiety having a mindfulness practice and simply noticing my surroundings from time to time helps me feel connected to my body and its’ relationship to the environment.
5. Get a care buddy. Find someone in your life that you can check-in with during moments when you need extra love and support. I check in with a friend every now and then when I need someone to vent to about my chronic illness. Sometimes it’s nice to have someone on your side that will just hold and listen to you without judgment.
6. Find humor. Even in my darkest moments, if I was able to find a vein of humor in a situation, I knew I still had the will in me to live and try again for another day. Humor can be hard to muster when you’re depressed or stressed out, but if you set the intention it’s easier to find the humor in any situation. If not, then just watch this dog fail their test to be a service dog to get you started.
7. Smoke weed and masturbate. Ok, I wasn’t going to end this list without mentioning these because it’s a freakin’ pandemic and relaxing naturally is hard to come by. I smoke to help with my lupus so I can be up and productive when it fights against me as well as sleeping soundly when insomnia won’t allow me to. Meaning to say, if you’ve never smoked, now is the time to try it. And masturbating is just a given. Put these two activities together and you have yourself a fun afternoon, my friend.
Lastly, be kind to yourself! Nobody is perfect despite what you see on Instagram – seriously. It may sound cheesy and overstated, but we WILL get through this. It may not feel like it’s possible right now, but there will be an end and it’s up to you whether you start adapting now or choose to remain stagnant in a world that will move on and change without you. Be patient with the process. We’re in this for the long haul so be prepared to fail and slip up over and over again. We’re only human, after all.
I encourage you to look to disabled communities, queer communities, and communities of color for leadership. Disabled people and those with invisible disabilities are the most resilient people I know – we have no choice but to be. If it weren’t for the communities I’ve fostered online and off, I don’t think I’d be where I am today. Make gratitude a daily practice. We are here now. Seize and embrace this precious moment.