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What I Learned from Two Years of Self-Quarantine

Self-Quarantine is an Opportunity. Lessons from a Concussed Rare Disease Patient.

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People are going crazy because they’ve been stuck at home for a couple months. I’ve been stuck at home for over 2 years. In January 2018, I gave myself my sixth concussion by clumsily hitting my head on our kitchen counter. My journey back toward health has been tumultuous, made extra complicated by the fact that I’m a rare disease patient. My super-extroverted self struggled tremendously with self-quarantine. At the beginning, I wasn’t able to read, watch TV, listen to podcasts, be social, or do anything productive. I lay in the dark all day, bored out of my mind, craving human contact, and panicking about how this concussion had pressed pause on my life and career. I’d wait like a puppy for my now-husband, David, to come home from work so I could have someone to calmly, quietly play with. He’d routinely return to piles of books on the floor, letting him know that I had yet again attempted to organize the bookshelves… but became overwhelmed, fatigued, and burnt-out from a task that, pre-concussion, would have delighted and energized me (I genuinely love to organize!!).

Photo by Sharon McCutcheon on Unsplash

Very slowly and carefully, I started to exit my cave. One of my first outings back into the world was to Whole Foods. I was utterly overwhelmed by the intense stimulation of lights, people, and noise. My neurological system couldn’t handle all the excitement, and I spent our brief shopping trip frozen like a deer in the headlights and clinging to David, who speedily guided me out of the store.

Any time spent with friends was — and continues to be — carefully calculated. In-person and virtual get-togethers are with people who I can be totally “off” with. These friends are gentle and understanding when my processing is slow and confused, and when I’m having difficulty with memory and word recall. They give me the time to fix my words before pouncing to critique what I’ve said. My inner circle understands my need for calm, low-key, brief, and limited check-ins.

Photo by Kinga Cichewicz on Unsplash

As an attorney and a go-getter, working through my impaired cognitive function has been frustrating and frightening. I’ve avoided sharing my challenges because most people don’t understand them. Those who know me well know that I’ve been fighting to get my brain back to “normal” and can see that I’m pushing through brain fog and other mental, emotional, and physical obstacles. Others don’t get that I’m experiencing any impairment because my intelligence covers up how hard I’m working to speak coherently. They tell me I seem fine, dismissing my reality and my struggle.

About a year into my hibernation period, one of my dear friends came with me to a medical appointment. Afterwards, she cautiously made a mind-bending suggestion that took me weeks to accept: perhaps the silver lining to this experience was that I was taking care of myself in a way I had never done before. I initially felt somewhat angry at the idea that ANY benefits were coming out of this forced time off. I could only see a home prison that prevented me from progressing in my career, having a social life, traveling, and simply living. Most of my life had just been about surviving and pushing forward — surviving the death of my dad when I was seventeen, and surviving years of rare and chronic conditions that I share with my twin. It wasn’t until I met David that I started to feel like I was really living. And now, concussed and flaring, and I felt like I was back to just surviving.

Throughout college and law school, friends, family, professors, and doctors proposed that I take time off from school to get my medical situation sorted out. I always refused. When you’re a rare disease patient, you don’t know if you’ll ever get better. I couldn’t comprehend pausing my education and life for a recovery that might never happen, and I worried that if I stopped running at full speed I would never be able to start up again. Instead, I pushed myself hard — stupidly hard.

Photo by Iñaki del Olmo on Unsplash

A few weeks before starting law school, I was on my way to a medical appointment and fell down a flight of stairs due to autonomic nervous system dysregulation, known as dysautonomia. This resulted in my fifth concussion. I didn’t even come close to recovering by the time classes started. Over the next three years, I started eliminating foods that were causing me to have anaphylaxis (life threatening!) and other unbearable symptoms. I ended law school — and studied for the Bar — having succumbed to what was essentially a starvation diet of only peppermint tea and honey. Somehow, I passed the two state Bar Exams I took. Sometimes I wonder: “Is the Bar Exam really that hard?” I’m not sure, because I blacked out during the exam. When people hear about the state I was in, they can’t believe what I managed to do. In hindsight, I can see the craziness and the potential danger of what I pushed through. At the time, I only thought about checking off boxes — and those boxes had nothing to do with self-care beyond my regular medical appointments and treatments. That had been my normal for as long as I could remember.

It took a while for me to accept that my self-quarantine came with some benefits, and to learn to quiet the judgmental voices in my head telling me that I have to quickly figure out how to get my career back on track and travel the world on a non-existent, urgent time frame. This time has granted me the opportunity to get to know myself, improve and prioritize my sleep, release ties to technology and social media, replace fears with courage, gain self-acceptance, let go of perfectionisms, learn self-compassion, and live in gratitude.

The April after my concussion, David proposed to me (YAY!!). I knew it was coming (I designed the ring!), and it DEFINITELY helped my mood to have something sparkly to stare at. My concussion had brought back some previously resolved vision problems, so I started planning our wedding with broken eyes and an impaired neurological system. As time passed, I became increasingly nervous about how I would be able to manage our celebratory weekend; for the months leading up to it, I could rarely leave the house. Our wedding was absolutely stunning and magical — and thanks to all the adrenaline pumping through my body, I got through it without any major symptoms! I still need to remind my inner critic that the minor imperfections no one else noticed don’t matter — and that I planned my dream wedding to my dream man while struggling deeply (though imperceptibly to most) from my concussion and a complex constellation of conditions.

Here’s a bit about what I learned:

Sleep

Sleep is the most important and undervalued part of anyone’s life. As someone who has been diagnosed with a sleep disorder and adrenal problems, I have lived most of my life getting terrible, non-restorative sleep. As a result of this recent concussion, I barely slept for two years.

I decided to make sleep my top priority. I set a rigid evening routine that included NO technology within 2 hours of a brand-new 9:30pm bedtime. I set my phone to automatically switch to “do not disturb” at 7:30pm, and started charging my phone in the living room rather than next to the bed. I started dimming the lights around 7pm to help train my brain to understand that bedtime was coming. The most life-changing impacts came from the introduction of supplements addressing my adrenal dysfunction and a THC/CBD suspension.

Technology Addiction and Boredom

People spend hundreds, if not thousands, of dollars visiting tech-free retreats to escape the unhealthy habits they’ve built up in connection with their phones and computers. I implemented a variety of simpler and cheaper steps to untether myself from my technology.

I made my phone less addictive by setting it to grayscale, deleting my Facebook account, and turning off all notifications on all apps. I only follow positive accounts on Instagram that inspire me, boost my mood, are enjoyable, and perhaps educational. I set a morning routine of not picking up my phone until I’ve been awake for a few hours, after I’ve had some quiet time to breathe, meditate, and/or do biofeedback, which have been wonderfully calming routines to incorporate into my life (not just in the morning). Biofeedback (I use HeartMath) had a profound impact on my phone attachment. After just two or three sessions, I picked up my phone out of habit, started scrolling through social media… and got bored immediately. Apparently social media addiction comes from avoidance, and with my brain relaxed and balanced, I didn’t need to avoid anything in my real life!

Everyone should aim to have a calm and unfrazzled mind that can face the day’s challenges, which may include a lack of activity and external stimulation. As my mind became increasingly comfortable with stillness, I noticed that I started feeling more creative and full of ideas. As I’ve come to learn, boredom allows the mind to wander and daydream, thus inspiring creativity. When our heads are stuck in our phones, there’s no opportunity for the brain to drift.

Fear, Fear, Fear

Fear of judgment, fear of failure, fear of mistakes. Identifying and working toward resolving these fears has been a process involving introspection, meditation, thinking, journaling, talking with my husband, reading, and listening to wisdom-filled podcasts.

While I’m very open in my personal life about my health challenges, I’ve kept my disabilities fairly under wraps professionally out of fear and embarrassment. Early on in my career, comments from colleagues led me to feel like I needed to keep my truth hidden. I recently asked myself: why should I be embarrassed or ashamed of my disabilities? What I have persevered through demonstrates my grit, tenacity, determination, resilience, intellect, value, power, strength, and ability. Why should it be unprofessional to share that I have a disability? People with visible disabilities can’t keep their disability a secret. Just because my disabilities are invisible, why should I feel the need to hide them? Hiding my truth gives others power over me. Abusive, gaslighting relationships are a thing of my past. I choose not to give people power over me like that anymore.

This work is still a journey, and doesn’t become resolved by just thinking about it. Letting go of perfectionism takes active work. I listen to uplifting, motivating, and educational podcasts (including the Broken Brain PodcastHow I Built ThisWork in ProgressThe Thrive Global Podcast, the Align Podcast, and On Purpose with Jay Shetty). I practice letting go of expectations and judgments, and learn to access and express and accept my truth through reflective journaling, breathwork, meditation, and movement (with my favorite being Kinrgy!).

Self-Compassion

People often beat themselves up, and save compassion for their friends, family, and even acquaintances. I noticed this pattern, in connection with being a perfectionist, and I decided to put a stop to it! I have trained myself to speak to and encourage myself with compassion, understanding, and generosity. Through journaling, I taught myself to use kinder, less judgmental language toward myself. I write words (self-compassion, gratitude, courage) that help me focus on developing my emotional and mental health at the top of my daily to-do list. I have an accountability partner (my husband) who catches me when I am unkind to myself and helps me turn around my statements. Lastly, I’ve put distance between myself and toxic people.

Forgiveness

I’ve learned to forgive and let go of being a grudge-holder. Before my twin and I were diagnosed, doctors told us that our physical, genetic disorders were all in our heads. Loved ones suggested that our mother was making up our symptoms as a way of dealing with her husband’s (our father’s) early death. Friends betrayed our trust. A former boyfriend abused me and left me shattered, scared, and unsure of myself.

I finally processed that grudges are more exhausting than they are valuable. No one benefits. People have limitations, they make mistakes, they have different values and ways of existing, they aren’t always great communicators. Forgiveness isn’t saying they didn’t do anything wrong; it’s letting go of the weight you’ve been carrying. It’s magical and freeing.

It took more work to forgive myself. Perfection doesn’t exist, and neither does “doing it all.” Life is busy, challenging, overwhelming, and a lot to handle — especially when you’re really sick. Sometimes it’s hard to see that groups of friends you used to be part of are still a group — but without you because you just couldn’t manage to keep up with them, and they didn’t understand your reality. I’ve had to forgive myself for the friendships I was unable to maintain and to be grateful for the wonderful friendships that have persisted over many years with compassionate, understanding friends who appreciate my limitations and support me.

Gratitude

Our brains are wired to default to the negative, but we can take back the controls and train ourselves to live in gratitude, which leads to a much happier life. Starting and ending my day with at least three things (big or small, exciting or mundane) I’m grateful for has been immensely helpful for building a healthy and happy emotional and mental well-being. Sometimes I talk these bits of gratitude out with my husband, other times I write them down in a journal. Developing a gratitude practice will lessen the amount of time you spend complaining, which everyone around you will appreciate. It will also reduce your stress. This approach even works when your refrigerator breaks on Christmas Day and you can’t get a replacement for two weeks! How lucky we were that that was our biggest problem, and that we could afford to purchase a mini fridge to help us get by! Perspective and gratitude are free and effective tools for a more fulfilling life.

Owning my Voice

I noticed that I often weakened my statements by starting with “I think” — when I didn’t just think, I knew!. And I preempted any potential negative feedback by cushioning suggestions with “I could be wrong” or “this may not work.” Women, more often than men, use this kind of language to distance themselves from their words. I imagine anyone who has been repeatedly berated for speaking up might also use this kind of fear/insecurity/self-doubt/self-protective-based approach. I’ve taken advantage of this time away from the world to learn to own my own voice and to make a conscious effort to speak more authoritatively, standing empowered behind my words.

Photo by Javier Allegue Barros on Unsplash

Self-quarantine is an opportunity. Be methodical and take your time. Set daily rituals. Find specific things you want to improve and be deliberate. Team up with an accountability partner. It’s taken me at least a year to peel through the layers of the onion, and I’m only just figuring out what to do with my career! Good luck!

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