Your Voices: TBI and COVID-19

Over the last several weeks I’ve been waking up wondering when and if things will be normal again … and going to bed thinking the same. In times of great distress, I sometimes forget that I am not alone in my struggles. The struggles by nature make us feel alone.

I thought it might be helpful to hear from others in our community. I checked in with some caregivers and survivors, and here is what they expressed regarding recent events:

• Most services have been cancelled and/or pushed back. The lack of physical, recreation, equine, yoga, and music therapies has been one of the greatest challenges.
• It has also been less than ideal conducting appointments via Zoom, Facetime, and Skype with providers. This doesn’t work very well for some survivors, and for others it doesn’t work at all. This increases the angst about making sure everything in terms of physical and overall brain health is in order.
• Missing community outings and visits with family and friends have caused both caregivers and survivors to feel more isolated. One person shared, “As a caregiver who is very active and social, being confined to the house with no daily routine has been challenging. Finding ways to fill my son’s days on my own has also been a challenge. I see him becoming less engaged due to what I'm guessing is boredom and lack of activity in his daily life.”
• There have been severe disappointments around the pandemic, things being shutdown, and the restrictions in place. Some survivors expressed that perhaps now others understand the isolation people living with TBI feel and have felt for years.
• A group that voiced intense isolation were those in care facilities that had closed to the public, including family and friends. They have put pleas out on Facebook reminding people of how lonely they feel. One survivor, who is also blind, shared frustration at the lack of basic connection. This is really heartbreaking.
• A caregiver from Delaware wrote, “The greatest challenge for me has been keeping everyone positive when it's hard for me, as well. We've done a lot of looking on the bright side. I think the best way for people to lend support is to check in from time to time, so one can commiserate and share your struggles.”
• Finally, a mother from North Carolina shared that she not only feels deep concern and worry for her own safety regarding COVID-19, but also for her son. She said she is constantly practicing vigilant precautions, while trying to reassure her son that everything will be okay.

Some of the deeper concerns were depression, increased seizure activity, enhanced mood issues, extreme exhaustion, and amped up caregiver burnout. In spite of all this, it seems a lot of us are pressing into hope.

I’d like to propose some questions I often refer to in my own self-care practice. I hope they may be of help to you. You can answer them in a journal, by talking with a friend, or by responding to this blog. Answer them in the way that feels safe for you. I call this “practicing the pause.”

What I mean by that is checking in with our self — survivor or caregiver — and being open to sitting with the answers. I’ve discovered that taking a moment to really explore our internal landscape or talking with another about basic things helps navigate the difficult situations.

Can we give attention to the following?

• How am I doing? This is a meaningful question to return to when you feel overwhelmed and need reflection. It is healthy to practice self-check-ins.
• Are there activities that currently bring joy and comfort? How can I tap into more of those things?
• Finally, what might I need to take a break from? Social media/the news, etc. There are a lot of things that add to our heavy emotions right now. Mental fatigue is something caregivers and those with brain injury shouldn’t ignore.

There are no straightforward solutions, and they certainly don’t lend themselves to a quick fix. Tapping into resources — like Love Your Brain — that foster resilience and inspire courage is a good place to start.

Is there something that’s helping you find hope and peace? Please let me know in the comments.

This week I was thinking about many, many things, and the name of a friend’s business came to mind. It is called Given to Love. The solution for myself was in that moment, for that day, simple … may I be given to love? The answer was “yes.”

Photo: This is my dear friend, Christy. Her son, Dustin, was Taylor's roommate at Bryn Mawr. Caregiver moms. ♡ Love warriors.