Living with Traumatic Brain Injury in the time of Covid 19

“If you want to make g-d laugh, make a plan.” When I first heard this saying, years ago, I laughed, thinking that it was a clever meme, not grasping the importance of the wisdom. I made a plan to attend the first inauguration of President Obama; to be part of that wondrous moment in history. I deliberated about the clothes I’d bring and where I could find bathrooms near the Capital Mall. I prepared carefully. The farthest thing from my mind was the possibility that my plans would dissolve in a moment of terror. I stepped off the D.C. metro at a stop near my daughter’s house. I started to think about what to order for dinner. Wordlessly and suddenly, a stranger came up behind me; he had a hammer and brutally assaulted me. My skull, hands and life, were fractured and unalterably changed.

The shards from that attack of have been pieced together, some with titanium and mesh, some with of fits and starts of therapy and hard work. I cannot go back to the way I was before the assault; my head has ridges of bone and scar tissue; my hands have slim scar lines, and are often stiff and resist flexing. I have cognitive deficits and constant fatigue. I am still learning how to keep moving forward, which includes grasping that plans only provide a momentary promise that there is a predictable future; making a plan, in fact, guarantees nothing.

Over eleven years, I have learned how to size my life so that it fits the needs and demands of my traumatic brain injury: reduce noise, limit emotionally taxing situations, avoid cold weather, meditate, get fresh air and plenty of rest. I have found ways to reduce the dissonance between the unending challenges of traumatic brain injury and the demands of everyday life.

Traumatic brain injury is invisible to most, and I have learned to accept the loneliness that comes from living with something that is chronic, unobserved and minimally understood by others. I developed a version of shelter in place; predominantly stay inside of myself and venture out with caution.

And then Covid 19 happened. I can no longer discern whether it entered slowly or barged through the walls and rooms of daily living, announcing, “I’m here and everything has changed.” Covid 19 has no boundaries. The virus attacks anyone, anywhere, regardless. While the actual virus is microscopic, its impact is seismic and, like an earthquake, the ground that shifted and broke open, cannot be fitted back.

In the midst of this pandemic, I still have traumatic brain injury and must still pay attention to reducing the effect of stress on my brain. TBI reduces the ability, in general, to manage and regulate stress. Certain hormones, such as cortisol, are released when the body senses danger. Cortisol helps the body fight the perceived danger, however, if the stress continues, cortisol levels rise causing a variety of potential health problems, including exacerbating the condition of an already plagued brain. The reality of Covid 19, is that the collective strain of living in it, and its’ growing momentum, is unrelenting.

Because the majority of us live in regions where Shelter in Place is mandatory, our living situations may be significantly different than before the pandemic. Children are home from school. Other family members may be present. Roommates don’t leave for the day or the weekend, or people who were once daily visitor’s, can be only virtually present. Finding a private space, with no intrusions, may be more difficult now. TBI has forced (or taught) me to adapt to many unexpected situations. My challenge now, is to find the boundaries best suited to contain the consequences of TBI, in the midst of a pandemic that is terrorizing everyone. The best way to deal with this conundrum, for me, is to follow the guideposts that have helped me wend my way over the past 11 years.

The most significant guiding principle is that I need to stay within my bandwidth, the boundaries within which I can find calm.

· Take time for quiet and silence.

I must continue to allow my body and mind to just rest part of every day; to be silent. I spend from 20 minutes to an hour every day alone, resting or napping or sometimes sitting in nature.

· Go outside, move, breathe fresh air. After my injury, I didn’t want to walk, or do anything. When Koufax, my service dog, came into my life, I had to go outside to give him a walk. I found that walking helped calm and refocus my thinking, and also brought me joy. Walking outside is an approved, and essential activity, within the confines of living in quarantine.

· Limit or avoid time around loud sounds and bright lights. Both sounds and light exacerbate my tinnitus and frequently trigger headaches. I bought a good pair of head phones, the kind that cover my ears because I don’t like the feel of ear buds. The headphones both block out external noise and provide entertainment, through a pod cast or the comfort of music. I found an eye mask that I once used when flying, and now I use it to soothe my eyes and eliminate visual stimuli.

· Avoid high stress. Of course, the current context of all of our lives, is one of tremendous fear: for ourselves, our loved ones, the financial well- being of our own lives and the country as a whole. This pandemic will change what was considered normal, everyday and, what we took for granted. What shape the new will take is unknown. To help reduce my stress level, I try to meditate every morning, and I participate in a yoga class three times a week via Zoom. I also try to spend some time in a nature, breathing and enjoying the beauty of my surroundings.

· Turn off the news. For me, this has been a hard lesson to follow. I’ve always followed the news closely, and I want to stay informed. However, the weight of the despair carried through the news, starts to seep into me after an hour or so, and I can feel myself becoming depressed and increasingly fearful. Now, I make sure not to watch news just before I go to bed and try to remind myself each night of the many ways in which my life has abundance.

· Be of service. For the first few years following my brain injury, I had limited capabilities and needed a great deal of help. When, even during that time, I could offer a small kindness to someone, I felt stronger and, momentarily not focused on my own condition. In the era of Covid19, I make sure to contact people from all parts of my life, just to say hello. I try to give financial support to places in need. I try to do what I can for local business. I do my best to think beyond my own circumstances and in doing so, I get a reprieve from my own ruminations.

· Live one moment at a time. While a long-held truism, the practice of living one day, one moment at time, has never been more vital, especially while living with traumatic brain injury in the time of Covid19.

Author of Headstrong: Surviving a traumatic brain injury, Professor Emeritus, Springfield College, Massachusetts, love family, friends, the ocean and my dog

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