What 3.5 years of living in relative isolation has taught me

At the moment that I am writing this, it has been 3 years, 6 months and 17 days since I have been able to be out in the world, in any sort of functional way, due to the aftermath of a traumatic brain injury. Most of this time, I have been secluded in my home due to a cascade of lingering neurological symptoms that make it difficult to leave my house.

I went from working full-time as a healthcare administrator and trauma psychotherapist, to being unable to walk independently, return to full time work (after multiple tries) or tolerate environmental stimuli, including the presence of the people I love most, all while experiencing significant neurological fatigue.

With the arrival of this recent, global pandemic, what many believed to be “hysteria” has proven to be an international crisis. You are being asked to step away from the things that feel most meaningful to you: your work, your relationships, travel, worship services, communal gatherings of all kinds. We don’t realize how life-affirming these face to face fixtures are in our lives, until something happens that challenges our access to them: enter COVID-19.

As more severe social distancing measures are being put into place, some may be grappling with existential questions such as: How will I cope without the structure of my life in the outside world? How will I work from home when my children are out of school? What will the impact mean for my mental health, relationships, sense of belonging or productivity? Without the stimulus of the outside world, who am I? What’s left? How will I stay busy?

Some people are wondering where they will get their next meal, how long they will go without income or childcare, how getting sick will compromise an already debilitating underlying illness. And for many, there are existential and practical concerns.

This pandemic is shining a light on the holes in our current democracy and how we are set up (or are not set up) to take care of our people. I feel hopeful that there will be “lessons learned” for all people, that will have a positive impact on our society, on what we value and how we care for ourselves and one another. Hope and despair can coexist. This hope and idealism is not meant to obscure or minimize the real impact and tragedy of COVID-19.

While much of what I mentioned above requires policy change and leadership, I want to offer some practical tips on how to cope with the existential and psychological effects of quarantine, while also growing parts of yourself that have been calling for your care.

This is not a list of do’s and don’ts. Everyone copes differently. These are concepts that have served me well. As with anything, take what resonates with you and leave the rest. There is no one way to do things, so let’s be kind to ourselves and acknowledge that we are all doing our best.

A love note from @inconvenientlyhuman on Instagram

Structure:

Structure can be psychologically organizing. When we lose our structure, we can feel destabilized. When fear is also present, things can feel especially overwhelming. Try creating a daily schedule that balances the things that need to get done with self-care and pleasure. When we lose our routine, we can also forget to hydrate and eat. Keep a large glass of water nearby and make sure you are building in time for nourishing meals. Set reminders on your phone! Access to clean water and food are not a given. If you have resources, please consider donating to your local food pantries (preferably money), and to clean water initiatives.

Maintain connections

Humans are wired to connect, and being in isolation does not mean that we have to be alone. Many of my closest relationships have deepened since my accident, even though the frequency of seeing these people has diminished significantly. This is an opportunity to get to know the people you love in new ways. Consider connecting over text or video platforms. I play a game with a close friend of mine where we ask each other mundane questions to get to know one another better. It’s actually really fun! Another friend and I watch trash TV together from our homes on opposite sides of the country and text throughout as a way to enjoy one another’s company. There are so many creative ways to connect.

An excerpt from the mundane question game, shared with my friends permission :)

Reach out for support

It is really normal to have a lot of conflicting and changing thoughts and emotions. Whether it be a trusted friend or a therapist, do not hesitate to reach out if you are feeling stirred up. Shared experiences can deepen connection when we are open to sharing our humanity with one another.

When we are all going through something at the same time, you may want to ask your friend if they have the bandwidth to listen. They may not and it’s probably not personal.

If you are a caretaker by nature, are in need of support and have trouble asking for help, this is an opportunity to challenge that part of yourself by reaching out to trusted friends who have demonstrated a capacity to be there for you.

We are wired to connect and connection can feel scary if you have had experiences in the past that have made you believe that you have to be “the strong one” or that your needs are “too much.” Consider leaning on the people you trust to challenge that part of you, even if it feels scary.

Cozy thoughts from @revealatori on Instagram

Rest

Silence and rest are healing and restorative, and can feel threatening to those of us who actively avoid slowing down for fear of what sitting with our thoughts and feelings will mean. Having your life come to a halt can be painful and can also provide opportunities for self reflection and growth. The ways in which we tend to fill our lives can be a salve for underlying pain that has yet to be integrated or resolved. Without our daily hustle, we might notice that unhealed aspects of ourselves come forth to be witnessed and attended to. It is through slowing down and rest that these parts of ourselves can be excavated and cared for. Not all are able to slow down at this time. When we can, taking the time and space for healing has ripple effects.

What feels restful to you might be different than what feels restful to me. As a Type-A person who used to overwork, I am still learning what rest looks like for me. This is an opportunity to examine the extent to which your self worth is tied to productivity and also an opportunity to invest in your own well-being — quite the act of rebellion in the toxic grind culture we are operating in.

Self care

While painting your nails and applying face masks at home (after washing your hands) might be a fun way to pass the time, that is not the kind of self care I mean. Now is a really good time to set boundaries. Have compassion for yourself and allow yourself to engage in behaviors that make you feel safe. Self care can look like limiting the amount of incoming news, social media or emotional support you offer. While it can be a hard muscle to flex, it’s okay, and can be important, to say no.

It can be so easy to get lost in our phones, refreshing the news for updates and seeking connection or escape. If you are feeling overwhelmed by your phone usage, you might consider taking planned breaks. This could look like setting a timer and putting your phone down or re-evaluating your phone usage when the timer goes off. There are also apps available that track and limit the amount of screen time you use in a given day.

When I notice I need a phone break, I like to completely power my phone down, so that when I reflexively pick it back up, as I inevitably will, I’m reminded that I am taking a break. It’s also okay to want to escape, and to follow that impulse periodically.

There is no need to judge the way you are coping. If you find that the way you are coping is creating more distress, that can be a sign to re-evaluate.

Managing strong emotions

While some emotions may feel harder to sit with, there is no such thing as a bad emotion. It can be helpful to think of an emotion as a signal that there is a part of yourself that requires attention and care.

When you are feeling a strong emotion, as most of us inevitably will, try not to judge or ascribe narrative to your feelings.

Usually it’s the story that we attach to our emotions that creates anxiety and internal strife rather than the emotions themselves.

For example, if you are feeling afraid, you might reflexively begin to think of all of the potential outcomes of what might happen as a result of this pandemic. This would be a completely understandable reflex and is often a strategy that comes from trying to gain control or manage a situation when there are so many unknowns. This style of coping may inadvertently exacerbate the fear response and send you into a cycle of despair, without having all of the facts.

Emotions are not facts, but they are all valid and important to acknowledge and care for, with patience and compassion. When you are feeling afraid, remember that fear is just one part of a bigger picture of you. We all have multiple parts or aspects of ourselves that are always alive and make up our wholeness. We are whole and nuanced beings even when a specific part of our human experience may be louder than others. Let’s uplift and care for all parts of ourselves.

We all have different needs and preferences when it comes to processing and coping with strong emotions. When you are feeling grounded, make a list of people and activities that help you feel supported and cared for. That way these ideas are available during heightened states when your mind isn’t as clear.

If you catch yourself over-thinking, you may want to ask yourself if there is an emotion driving the thoughts. It can be helpful to attend to the emotion rather than get caught up in the thoughts associated with the emotion. Once you identify the emotion, which may take some practice, take a moment to notice what the emotion feels like in your body. Are there physical sensations associated with that emotion? (It’s okay if the answer is no.) Is there anything you would benefit from to feel supported or cared for? This may look like offering up some kind words to yourself, going on a walk, putting your hand over your heart or asking someone you trust for a hug.

Once you have identified an emotion, for example, fear, invite that part of yourself in. Imagine offering your fear a cup of tea or noodle soup and let the fear part know that you see it and are there for it. You might ask your fear if there is anything else that might help it to feel cared for. Remind yourself that fear is just one part of you. How can we nurture these real parts of ourselves without either denying them or letting them lead?

Photo by Kira auf der Heide on Unsplash

A caring action toward a hard feeling can go a long way. You get to decide what feels most caring to you, knowing that what you need may change from moment to moment. Emotions ask us to listen to what our needs are.

The idea is to practice expanding your capacity to sit with and care for your distress, rather than to side step it. If you simply distract yourself, the emotions will likely continue to surface and may get louder. With that said, mindfully engaging in distraction can be helpful to titrate the emotional experience when the emotions feel too big.

If you notice that an emotion is becoming overwhelming, try rating the intensity on a scale from 1–10. 1 means that the emotion is barely present and 10 means that you feel completely overtaken by an emotion. If your emotion is a 6 or higher, you might consider engaging in mindful distraction. Pick a distraction that feels nourishing or supportive to you.

That may be getting up and going for a walk, allowing yourself to get lost on the internet for a predetermined period of time, cooking a meal, playing with a pet or whatever feels supportive and redirects your attention. When you catch the emotion at a 6, rather than at a 10, it can be easier to make the choice to engage in distraction and then return to the feeling when your nervous system is feeling more settled.

When we start to attend to our emotions with compassion, without trying to understand what they mean, the intensity tends to settle down, making space for more clarity.

Grief and loss

Grief is often understood in the context of losing someone we love, but it can encompass so much more. A large part of my brain injury recovery has been grieving the life I lived before my accident, my changing personal and professional identities, my physical functionality, and the dreams I had for myself and my family.

Many of us will experience grief as a result of losses associated with COVID-19. Whether those losses are people we love, or plans and dreams that cannot be carried out in the ways we envisioned, it will be important to find ways to acknowledge and ritualize these losses. There are several articles that address grief amidst the COVID-19 crisis, one of which I am linking here.

Play

Play is an antidote to fear. When we are engaged in play, the social engagement center of our brain is online, making fear less accessible. What brings you joy? What brought you joy in the past that might be worth resurrecting? I have found that solo dance parties to jams from the 80s and 90s uplift my spirit. I also enjoy playing fetch with my dog, even though she expects me to do all the work (pug problems!). Board games, even when played over virtual platforms, can be a way to engage with others in a playful way. Go on walks where you challenge yourself to notice the texture of tree bark, the shapes of leaves, the interplay between light and shadow. Mindful play can be a way to interrupt active worry, even if just for a second. The goal is not to ignore your emotions. It’s important to listen and respond to what you are feeling, but we can benefit from “pressing pause” when we are feeling overwhelmed or flooded.

Images from nature walks I have taken during the course of my TBI recovery

Learn something new

When our prefrontal cortex is engaged in learning, there is decreased activity in the limbic system (emotional center of our brain). This could be reading, learning a new skill on YouTube or participating in an online course, to name a few options. Several learning platforms such as Coursera offer free learning experiences and more are springing up as a result of COVID-19.

Generosity

Share your resources: financial and material, if you can. While hoarding is a primal response to fear, now is not the time for hoarding, it’s the time for generosity. Venmo or PayPal people who have less than you. Hoarded lots of toilet paper? Share with your neighbors. Faceboo k neighborhood groups are a great way to mobilize on-the-ground supports. Call your friends and neighbors on the phone who may not have access to or use the internet.

While it is time to be generous, this is not time to compromise your safety or the safety of others. Many of us do-gooders have impulses to “rescue” people or save the world, especially when feeling helpless. There is a difference between supporting fellow humans, and impulsive “rescuing” or saviorism. When coming from an impulse to rescue, our efforts can be less effective than we intend them to be, serving our impulse more than it serves the intended audience. If we overextend ourselves now, how will we have the stamina to continue making change in a sustainable way? Let’s all be thoughtful about our impulses and curious about where they come from. By putting yourself at risk, even in the spirit of generosity, you may put others at risk. Let’s do as much remotely as we can to avoid further contamination when possible.

Create!

Make stuff: food, art, crafts, writing. Don’t worry about the outcome, challenge yourself to enjoy the process of creating without an agenda or goal. This can be an opportunity for growth for many of us who grew up in or are living in capitalistic societies. I loved to create as a kid. I would spend hours painting and writing poetry. For the first few years of my disability, I had difficulty creating without thinking about how I’m going to make money off of it. I lost my capacity to create for the joy of creating, so I went rogue and started creating puff paint pun t-shirts for my fellow weirdos. It sounds silly but it was liberating to do something that the “capitalism-conditioned” me judged as frivolous. It’s time to reclaim our time and our joy.

Technology

Technology can be beautiful when used intentionally. When used well, technology can be a vehicle to share information, deepen connections and come together when you are stuck at home. I have been heartened by the many ways in which people have offered up their services and skills on virtual platforms in the last few days. I have seen:

  • Musicians offering to share their music for donations because music is healing and musicians are unable to work due to canceled events
  • A community of healers coming together on Facebook to skill share during this time of fear and isolation
  • Meditation circles
  • Friends hanging out over Zoom
  • Public institutions, like museums, offering virtual tours
  • Movie theaters making current movies accessible to people who are at home
  • Expanded telehealth options
  • Online support groups for social isolation
  • Exercise classes being streamed online

It warms my heart to see people coming together in this way. At the same time, it should not have taken a global pandemic for the masses to optimize technology for inclusion when marginalized people have been living in isolation for a long time.

Hopefully an outcome of COVID is that it will expand awareness on the importance of accessibility. People with disabilities have been screaming about accessibility issues forever, including the toll that living in isolation has on our sense of belonging, loneliness, and on our ability to make any sort of reasonable living.

I am holding the big picture of these unprecedented times in my mind and think that humanity’s mobilization around accessibility is beautiful. It is also deeply stirring to witness the ways in which access needs and requests have been denied for so long. It exposes the way in which our society is ableist and could benefit from expanded compassion and rights for people who have diminished capacity to be in the world, and still yearn to live well. Going forward, I hope we can continue to be responsive to people’s health needs and inclusive of folks who cannot participate in life in the ways they would like to. Accessibility improvements help everyone.

At 3.5 years, I am still a newbie at living in relative seclusion. Many others have been at it much longer. I hope we can uplift the voices of the folks that have been living this way for a long time. People with disabilities who live in isolation every day have a lot of wisdom to share. It’s time to listen.

Notes:

I want to be mindful of the people who are not able to self isolate due to essential functions of their job. Whether it be front line healthcare workers, delivery drivers, postal workers, factory workers or the many other industries working hard to keep people safe or provide essential infrastructure during this time. I also want to acknowledge the people who have been infected with COVID-19 and are fighting for their lives, and their families.

As we post on social media, let’s consider the feelings of the people who don’t have the option to be home right now or who aren’t able to participate in virtual happy hours because they are focused on surviving.

Huge thank you to the following people for helping me to organize and share my thoughts:

Sharon, Megan, Julia, Melissa, Andrew, Tiffani, Tom, Cori, David, Mom, Dad, and of course, Katie.

As my colleague and friend, Robyn Golden always says, “it takes a village.”

Find me at www.amillheiser.com

Trauma psychotherapist in Chicago, IL, living with an invisible disability and writing about the existential impact of it all. Pug person and wannabe napper.

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