TBI, Dysautonomia, and COVID-19 (oh my!)

Living with a traumatic brain injury (TBI) is challenging. Add a pandemic on top of that and it’s even more so, as it is for everyone on our planet as we navigate life with COVID-19. While life has changed drastically for so many, for those of us who already live with chronic health challenges that caused social isolation long before the pandemic, life is pretty much the same. Most of the world is getting a taste for the first (and hopefully last) time, of what life has been and still is for me. Can you relate?

In 2019 my already limited energy, thanks to the many repercussions of my 2013 TBI (read the whole story in my book), tanked drastically. Running a full and successful holistic health practice took all my available energy, leaving me lying on the couch when I wasn’t seeing clients or students. After months of going between my couch and office and not much else, I made the difficult and tearful decision to close my practice of 12 years, ending my near 14 year career as a skilled bodyworker. Long before this decision and the closing of my practice doors in January 2020, my life began to look similar to the ones billions of people are living in the age of COVID-19: home, isolated, lonely, frustrated at times, and trying to find meaning and purpose in the current situation.

Living with dysautonomia (a dysfunction of the autonomic nervous system), among numerous other diagnoses as a result of my traumatic brain injury, has turned my world upside down, or at least shaken it up into a messy sludge at times. Like several of my TBI-related diagnoses, getting this diagnosis took years: over 6 to be exact. One thing has been very clear in my TBI journey- new challenges and gifts alike can and do show up at any time, no matter how long it has been since the fateful days my injuries occurred. Dysautonomia causes me to experience:

  • The inability to stay upright, even sitting, particularly in the mornings (sometimes well into the afternoon)
  • Lightheadedness when sitting, standing, or exercising
  • Irregular heartbeat
  • Low blood pressure
  • Gastrointestinal problems
  • Muscle weakness
  • Mood swings
  • Anxiety
  • Persistent, chronic fatigue
  • Exercise intolerance
  • Sleep challenges
  • Frequent urination
  • Difficulty regulating body temperature, and sweating abnormalities
  • Concentration and memory challenges
  • Poor appetite (leading to weight loss and potential malnutrition)

You can see a more complete list of possible symptoms here. Unfortunately, traumatic brain injury alone can have the majority of these same challenges, too. My inability to be upright in the first half of the day (at least), along with the exercise intolerance, were some of the first clues I had that there was more to my story. Finally receiving a diagnosis to label it made the challenges “real,” validating my experience, allowing me to not feel crazy or that it was ‘all in my head,’ and gave me something with which I could work to both accept and manage (currently there is no cure, and not even much in the way of treatment).

Spending so much time on the couch has meant that my only outings over the past few months have been to medical appointments or to run a few errands, which now have gone virtual (or postponed) and delegated to my husband, respectively. Before COVID-19 I only made it to the gym once or twice a week, and usually only once a week to the yoga studio. Now, even those rare, in-person interactions are gone, though I am so very grateful for classes being taken online so I can still do them and see some of my fellow “regulars” virtually. It’s been very challenging for this extrovert, albeit a mild one, to be at home by myself most of the day while my husband is at work on normal, non-COVID day (though he still has to go in on occasion right now). Most of my friends are self-employed and understandably preoccupied with growing their businesses, so I don’t even get responses sometimes when I reach out to them. My cat and dog are blessings with their constant presence and company.

Over the years since my TBI I’ve processed a lot of grief, and it continues to uncover itself layer by layer, and somehow seems to wax and wane daily as our world circumstances continually change by the hour during this pandemic. There’s the grief of all that I’ve lost over the years- abilities, relationships, my gym and yoga communities (for the most part), a successful and meaningful career, etc. – as well as the collective grief we as a human race continue to experience as COVID-19 spreads without discrimination. Now the world, with the exception of essential workers who are working so hard to keep us safe, healthy, and fed, understands what it is like to be at home all the time, many without jobs, frustrated, sad, lonely, longing for the life they once had. For most people on this planet, life will go back to “normal,” once this virus dies down and restrictions are lifted. People will gather, go back to work or find new jobs, go back to the gym, and all the things they love and need to do. But for me, and countless others with debilitating health challenges, things will pretty much stay the same as they are. There will likely be another wave of grief as I witness everyone else get back to their ways of life in the months ahead, knowing that I will still be here on the couch. By myself.

Though this sounds very depressing and dreary, it’s not all that bad, most of the time. Like everyone else right now, I try to adapt and make the most of it every day. There are always gifts that come out of any challenge if we are open to seeing them. They don’t always show up how or when we want them to, but if we are open to it, we will find them. My hope is that one of the numerous gifts that eventually comes out of this trying time is greater understanding, empathy, and compassion for those who are socially isolated due to health challenges. TBI folks have far too often been called “lazy,” and told that they are making it all up, when in fact, they are not. When you can’t get out of bed, or off the couch, and don’t have the energy to go outside on the nicest of days, this shit is real as much as someone with a visibly broken arm in a cast. Being isolated is hard enough: try being isolated and people not believing you, too. This happens to too many people with traumatic brain injuries and other “invisible” conditions, and it’s time for that to change.

May we as a world grow bigger hearts to support one another with more love and empathy, whether we have a virus, a brain injury, cancer, or are perfectly healthy. Reach out to someone you love. Letting people know they are not forgotten or alone is one of the greatest gifts you can give anyone at any time.