BRAIN WAVES

Brain Injury Alliance of Arizona Blog

How my Brain Injury Prepared me for a Pandemic

Laura Johnson & Ed Roth

Laura Johnson is a Phoenix resident who sustained a life-changing traumatic brain injury over a decade ago.

PHOENIX — By this point, you’re probably isolated, bored, and tired of staying indoors. Are you ready to get back to your old life or rebuild a new one?

Well, you aren’t alone. In fact, some of the things you are currently experiencing are similar to the side-effects thousands of survivors of brain injury or trauma grapple with quietly and without fanfare after an accident or illness alters their lives.

You could say that today, we are all experiencing the world in a way that some of those living with the invisible disability of brain injury have been slogging through for years.

Laura Johnson, Director of the Unmasking Project at the Brain Injury Alliance of Arizona (BIAAZ), herself a survivor of a traumatic brain injury, says the signs and symptoms are unmistakable. “They’re more than irritating; they can be debilitating. And it’s not just your imagination…it’s real.”

If the following sound familiar to what you’ve experienced during quarantine, welcome to the world the way some survivors of brain injury experience it all the time:

Losing track of time. Days seem to run together; you feel adrift and structure gives way to a feeling of being lost. For survivors, it’s a constant battle to instill routines, create daily and hourly schedules, and make lists of everything. Laura says keeping appointments and a regular exercise regimen is important, even if it’s just walking around the block every day.

Feeling “off.” Have a headache and wonder if you’ve come down with the virus?  Survivors often have head pains/migraines that leave them incapacitated. These “hazy days” come without warning, requiring them to lie down and stay still. What is more, monsoon season is right around the corner, and with it, a forecast of even more pain. Laura recommends being good to yourself, not feeling guilty, and prioritizing self-care. Check with your medical providers and see if they offer telehealth. As a survivor, she notes that being allowed to do physical therapy and meet with her medical team remotely during the pandemic has been a critical part of maintaining her physical and mental health.

Isolation. Even if you normally enjoy being alone, when experiencing constant isolation, the depression, fatigue, and anxiety can set in. In addition, you may be overwhelmed by a sense of dread. Laura recommends calling friends to check in with them, or utilizing online communication platforms like Facetime and Zoom.  If you are new to using technology like Zoom, find a friend to practice with and give it a try— just make sure you are wearing pants!

Withdrawal/Social Anxiety. Miss eating at your favorite restaurant, going to concerts, or just hanging out with friends? Not being able to go to familiar places and being forced to embrace this “new normal” can induce anxiety; for people with brain injury, that feeling is infinitely worse. They can be overwhelmed by new places, even for pleasant occasions, and withdraw from others immediately. Things they once enjoyed sometimes can be inaccessible for a long time. Laura says there are times she has driven to a concert or new restaurant, only to have to leave because she was unable to negotiate a new environment without having planned for noisy, crowded situations beforehand.

Grief & Loss. Many of us are in the midst of processing grief over the loss of things that made up the fabric of our everyday lives (like being a business owner), or coming to terms that things we planned for years, like graduations or a wedding, simply are not going to happen, or are going to look dramatically different. Brain injury survivors often must deal with constant loss on a large scale. Some awaken after an accident to find they are no longer going to be able to work in their chosen profession. Some lose houses, pets, and friends during grueling multi-month recoveries and must learn to embrace staring over for nearly everything. Those who have sustained a serious brain injury often have to relearn the very basics, like how to eat, walk, and talk. Laura suggests pivoting when possible to make the most out of what you do still have and enjoying that there are so many beautiful things about life. Surviving brain injury can mean processing ongoing loss, and some days, you just have t0 focus on the fact that you survived.

Unemployment/Under-employment. As we enter what many economists call an inevitable depression, everybody is nervous. Are you worried about losing your job? Was your position already eliminated? You might be experiencing unemployment woes similar to what many survivors of brain injury do. The disability population as a whole suffers from chronic underemployment, and for those with an invisible disability, those numbers can be even higher. After her accident, Laura struggled with the fact that she had gone from a “contributing member of society,” to seeking disability benefits to survive. It can be a humbling and outright horrifying experience, but Laura says you have to swallow a bit of pride and make sure you are getting the benefits you will need to sustain yourself during recovery.

Whether you are struggling due to the pandemic or a brain injury (or both), one of the keys to successfully coping, according to Laura, is reaching out to others to stay connected. She suggests talking to at least one person a day. “Know that we’re all going through the same thing, although with various degrees of intensity,” she says.

She also reminds of that fact that, “if you’ve seen one brain injury, you’ve seen ONE brain injury.” No two are the same, so no two people will respond to it the same way, just as everyone has reacted differently to the struggles they’ve faced under quarantine. Laura hopes this shared experience will help people be more aware and understanding of the challenges those with disabilities such as brain injury deal with and that everyone will treat each other more kindly as a result. “With this pandemic, unfortunately, people now have a sense of what we [survivors] have to overcome every day.”

Although it may not seem like it some days, the pandemic and the stay-at-home orders will eventually come to an end, and most of us will return to some semblance of the life we knew before— a world of vacations, restaurants, parties, sporting events, and concerts. However, for those who have been living with a brain injury pre-COVID-19, their “normal” may look much the same as during quarantine, with cognitive, emotional, and physical symptoms that still keep them home. If you have a friend or loved one in your life with a brain injury, remember to reach out and connect with them even after the pandemic danger passes. Your care and support can make an immeasurable difference.

It’s also important for people to know where to turn when they need help. The BIAAZ Brain Health Resource Center remains open for anyone who feels isolated, needs resources, or just wants to talk. Reach out at resources@biaaz.org or 888-500-9165.  All services are free.

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness, and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members, and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.

The Brain Injury Alliance of Arizona:

  • Works with the Congressional Brain Injury Task Force
  • Houses Arizona Brain Health Resource Center
  • Hosts the Statewide Opioid Use Disorder & Cognitive Impairment Workgroup
  • Deploys a  Statewide Opioid Use Disorder & Cognitive Impairment Response Team with peer support, training and family wraparound services
  • Facilitates the Brain Health Advisory Council
  • Manages a Statewide Neuro Info-Line 888-500-9165
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