Living Well After Brain Injury: Tips from BIAA’s Brain Injury Advisory Council
Categories: Being a Caregiver, Living with Brain Injury
By Paul Bosworth, Anne Forrest, Darcy Keith, Kelly Lang, Kellie Pokrifka, Carole Starr, and Angela Leigh Tucker, BIAA Brain Injury Advisory Council Members
Collectively, the members of the Brain Injury Advisory Council have been living with brain injury for 130 years! That’s a lot of hard-won wisdom about how to live well after brain injury. Read on for some of their perspectives and strategies.
There’s always something you can do.
Brain injury often takes away activities we used to do and changes who we are. The more we focus on all the losses and what we can’t do, the worse we feel about ourselves. Yes, it’s important to grieve the losses, but make sure you also spend time learning about the new you. Explore something that brings you joy! Start with a small activity, find success, and gradually build on it. Trying new things can be a path to increasing your self-esteem and self-confidence. Experiment with new activities and know that it’s OK and expected that you will make mistakes along the way – they are part of the process.
There are multiple solutions for working around our deficits.
If plan A doesn’t work for your brain, try plan B, C, D and beyond. Set up at least two plans. If forecasting is challenging for you, try reaching out to someone you trust for support. When things don’t go according to plan, be gentle with yourself and know that you’re doing the best you can. Sometimes the biggest setbacks can be the biggest opportunities for growth. Persistence and practice are key. Know your limits. Recognize what you do and don’t have control over. Keep moving forward; you’ve got this!
Living with brain injury means learning how to manage symptoms.
To thrive with a brain injury, we must learn to recognize our triggers and adapt to factors that make our symptoms worse. When your “brain battery” only has so much “charge” it’s important to know what activities will drain your energy and how to mitigate those feelings. One example is eating at a restaurant, which is one of life’s pleasures that can be challenging after brain injury. Eliminate the stress of decision-making by reading the menu ahead of time, deciding on your order, and writing it down for when you arrive. If car sickness affects you, arrive early to allow yourself time to recover before socializing. You can also try positioning your seat to accommodate for your needs. If visual stimuli are difficult, for example, sit facing a wall to help reduce things in your visual path or sit outside or by a window to reduce the strain of fluorescent lighting. If auditory stimuli make you feel worse, try sitting with the wall behind you to reduce noise. Don’t forget to bring your brain injury toolkit – things like ear plugs, sunglasses, and medications can make it easier to be out and about. It’s all about knowing what your brain needs.
Optimize your brain for long time periods.
Returning to meaningful activities, whether that’s paid work or a volunteer position, requires a lot of thought and consideration of how much energy will be required. Identify whether mornings, afternoons, or evenings are best for you. If you want to tackle an activity that lasts all day, take a break at lunch in a quiet place to recharge. Set a timer on your phone, dim the lights, and rest your head. Afterward, go back to your activity when your break is over. It’s hard to focus on doing a job when you’re hungry, so make sure to take a healthy snack break every few hours. You can reduce distractions by turning off things that may bother you, closing the door, and setting up an appropriate area for you to work. Finding a rhythm enables productivity.
Take ownership of your recovery and be open to new therapies.
“I’ve tried everything, nothing works.” If you’ve said this to yourself, it’s time to try something new. As much as we want our doctors to have all the answers, it’s still up to us to learn as much as we can. There are more therapies than meet the eye. Two things to keep in mind: insurance doesn’t cover every expense and each brain injury recovery is different. Start with the belief that healing can happen. We may not be able to return to our former selves, but progress is possible. Try exploring music, massage, yoga, and oxygen or cranial sacral therapies if appropriate. Persistence and trying new things will pave the way to enable a better day.
Living well after brain injury means recognizing the role of caregivers, too.
Family is the first line of support. Brain injury impacts more than just the survivor; the entire family and support network feels it, lives it, and walks through it together. We always talk about the survivor’s feelings, therapies, progress, and frustrations, yet the family and caregivers are experiencing those things as well. Just as survivors are doing their best in a challenging situation, so too are our caregivers. It is important for caregivers to take care of themselves so they can give quality support to their loved ones. Relying on one another is vital to the continued recovery and healing of the entire family.
Wellness is within your reach.
So much of brain injury recovery is out of our control; however, the most important basic tools to healing are accessible to each of us. These include sleep, exercise, hydration, nutrition, and meditation. Getting enough sleep and exercising can improve our energy, hydration can help mitigate some symptoms, eating nutritious foods can improve overall health, and meditation can calm a busy brain. Starting with just one of these habits can transform your continued recovery and help you maintain a balanced life.
For more tips from the Brain Injury Advisory Council, visit biausa.org/livingwell.
This article originally appeared in Volume 15, Issue 4 of THE Challenge! published in 2021.
