As I moved throughout 2019 I asked myself, “What could people give survivors that would actually feel meaningful? What kinds of offerings and interactions provide a lasting impression?”
My husband and I started brainstorming and came up with some ideas we know would mean a lot to our son, and perhaps they would mean something to a survivor you know. As always, these ideas come from a place of deep love that understands every brain injury journey to be unique.
Plan activities that support the survivor’s continued healing
There are activities that are helpful to a survivor, and on the flip side there are activities that can be harmful.
Often people with brain injury need less stimulation, a quieter space, and an unhurried pace. They may need to refrain from alcohol and avoid extremely loud, high-energy settings. If you and your buddies used to catch up at the local bar, perhaps consider having dinner in. Making a meal. Giving the survivor manageable tasks to complete. Let them be part of ordinary, quiet moments shared.
Consider bowling in the daytime, when the bowling alley isn’t as busy. Consider asking them to tag along for an outdoor adventure. Inquire ahead of time with the survivor or their caregiver, questions about how to make it work best for everyone.
Communicating about creating positive social interactions is extremely helpful. Many survivors struggle in social settings; and when we set them up for success, it is a gift to everyone.
Be mindful to include survivors and families who have less access to things previously shared. For example, if someone now requires a wheelchair, bring a movie or games to them. If a survivor is non-verbal, take time to speak to them and notice their presence. This can feel awkward, but in time it gets easier. Survivors feel and enjoy the energy around them. Include survivors at all levels or awareness. They need you!
Release unrealistic expectations
Refrain from the idea that people living with brain injury should be like those without a brain injury. Avoid placing expectations on them of how the survivor should behave, act, or respond. Instead offer space for the survivor to be his or her self. This means accepting the internal and external changes in them without judgment.
This can be really challenging and admittedly has been for me. Our son changed drastically after his brain injury. Some changes were glaringly obvious; others were more on the subtle side. As a society we have norms and ideals of how people should be. We can be rigid in our expectations. We often “judge a book by its cover.” Sadly, this approach affects people with invisible injuries and their self-esteem greatly.
I’ve found it incredibly compassionate when I meet Taylor right where he is. Perhaps he is not as steady on his feet. Someone might think he is intoxicated. He isn’t. I can’t give my energy to the perceptions of a stranger, so I don’t.
Perhaps Taylor freely walks up to those he’s never met or even old friends, with warmth and genuineness that is alarming. Or he mistakes a stranger for a friend. On the opposite end of the spectrum, he might insert his unsolicited, very strong, and unfiltered opinion in a coffee shop conversation, of which he isn’t even a part.
How I handle these interactions matters. As a caregiver and mother, I want to walk in acceptance and love for Taylor. If I feel embarrassed, that might turn to shame for him. Instead, can I allow myself to be abundantly proud of his recovery and personhood?
What a gift to say, “I see these changes, and I accept them and you.” They are not the end of the world!
Inclusion not exclusion
A few years ago I sat with the mother of Taylor’s best friend, and a longtime female friend of Taylor’s. We had a brutally honest conversation. This was a time I felt most broken and afraid. I was witnessing Taylor’s friends drop off, one by one. I was sensing rejection reaching the deepest parts of him. He would often ask, “Do you think people wish I would have died? Why don’t my friends like me anymore?”
I had to be proactive. His feelings were one hundred percent valid and realistic.
As I wept with these women, and they with me, I asked them to not forget my son … to include him, and to honor the before relationship in this after space. I felt vulnerable and afraid. I had observed much rejection towards Taylor, but I chose to speak in courage with people I trusted.
That night a choice was made. And it has been honored. Taylor has experienced inclusion with this family. When too much time passes, I can tell they remember their friend; and they make a strong effort to include the buddy they call “Bing.” This has been a beautiful gift.
As friends of survivors, we must know exclusion represents a form of rejection that reaches the core of the person being left out. Don’t exclude. Exclusion can be crueler than the injury itself.
Finally, be proud of your survivor and ALL survivors
The well of stories runs deep and wide. Each path is as different as the person walking it. There are survivors who return to work and some who will never be able to have that experience. There are survivors who communicate clearly and others who remain unable to speak or use their language in an understandable way. There are survivors who sing, dance, or practice yoga, and others whose bodies/brains can’t access those gifts.
Every survivor is working hard to rebuild, reconstruct, and reframe a new life and a new person. Each survivor (whether this seems visible or not) needs to hear they are AMAZING. RESILIENT. STRONG. LOVED. WARRIORS. They hear these things when we show them.
Our gift is in living a life that proclaims, “YOU MATTER, and I am grateful you survived.”
This is how love wins, over and over again.