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What Are Holidays Like as a Brain Injury Survivor?
Personal Perspective: The spirit of abandonment permeates the season.
Posted December 20, 2023 Reviewed by Gary Drevitch
I was asked to write about the holidays as an ABI (acquired brain injury) survivor. In one word, it's awful. Endless pain like a piranha’s loving maw gnawing on the flesh of your heart. Sadness seeping into every cell. Anger roiling and crashing into heaving sobs. Deep, affectionate, caring human love kindly leaving you alone on Christmas Day, New Year's Day, every day. The spirit of the season is abandonment.
ABI can land you in residential care. While some have families whose love takes them home and/or buys them gifts, others suffer alone in their rooms, knowing thatthose who love them are grateful to be celebrating without them and the need to accommodate their brain injury.
They receive:
- No visits.
- No phone calls.
- No gifts.
- No messages.
- Not even generic Christmas cards with a hastily scrawled signature in place of a relationship like those of us who live independently may.
Staff buy gifts for those living in assisted living facilities.
In the early years after my brain injury, I began to think that the only ones who cared about me and for me were paid. Can you imagine yourself, once a vibrant and vital part of your family, with friends who hung out with you, suddenly dealing with the idea that people had to be paid to spend time with you or call you?
I don’t live in residential care. I have some autonomy. But my holidays suffer from the same spirit of abandonment as many with ABI who are poor or wealthy, with family or without, living independently or not. Only my parents buy me a gift these years, but I stopped buying gifts for everyone else when I learned a heart-shredding lesson during the 2013 ice storm.
I used to carefully select the right gift for each person while not exceeding my limited means. During the 2013 ice storm and subsequent power outage, the news filled with stories about families delaying Christmas until the power was back on for everyone so that they could celebrate together. Not my family. Christmas had to happen on the day; if I was too exhausted from dealing with the days-long power outage and if my injury and pain levels limited travel, then a couple of rushed hours on a later day with a few would be good enough for me. And really, what was I expecting? They had priorities.
Brain injury exerts limitations on social activity. Sounds and sights overwhelm, travel exhausts, and your brain demands a time out. You can see in the eyes of your loved ones their impatience or resentment that you need to nap or a quiet place to be for a little while, not to mention their obliviousness to your financial straits. It’s not like you want to leave the festivities or need socks as your Christmas gifts, and you can’t shower them with expensive wants. You remember what it was like, bustling in the kitchen, chopping veg, checking on the roast potatoes and Yorkshire puds, while gabbing non-stop in a laughing, chattering group, having wrapped a pile of presents. Nap time comes at the end of the day when you’re stuffed from the feasting and sleepy like everyone else—not in the middle of dinner preparations.
Socializing consumes a lot of energy. You don’t realize how much until you’re forced to live with an injured brain. You must choose between an hour-long coffee date with a friend or writing an email, for you can’t do both. And that kind of choice arises every single day: Will I meet up with a friend, go to church, phone my sister, have lunch with mom; or will I write that overdue email, work on a photograph, read for a few minutes, go for my doctor-prescribed walk, or write a blog post?
Holidays, though, are can’t-miss events. The putative spirit of the season is to gather together to celebrate. Holidays for an ABI survivor mean resting up days before and recovering days after, planning ahead for when and where it’s best to nap. But that pacing burden is only on the injured one. Everyone else can carry on their lives as normal. They don’t need to rest up and recover for as long as their injured loved one. They don’t have to take a nap or find a quiet room in which to recharge alongside us. Yet nothing spoils the mood more than listening to them whine about their victimhood, about how they have to deal with all your changes—as if you don’t.
Some talk about Christmas being for kids. It isn’t. It’s for people. For everyone.
In the Christmas story, the shepherds were adults, alone with their sheep. No family around. No human society to hang out with them. Sheep required constant vigilance from their own foolhardiness and dangerous predators. The three wise men embodied adults rich in wealth and intelligence, with the energy to travel great distances. A manger connotes domestic farm animals requiring human care to keep them alive. Jesus arrived for them all. The gift wasn’t material goods; the gift was being seen. The gift was no longer being alone, abandoned by human society, but love acted out any and every time you need it when you need it. The three wise men gave gifts that acknowledged the Christmas gift. The original spirit of the season was to show up at the door of the abandoned, the destitute, the young, the old, the dependent, and the rich so as to establish a daily relationship.
Today, it’s as often to shut the door on the abandoned, the destitute, the brain injured, the ones whom people say they love. Charity is for the stranger, the organizations that supply charitable tax receipts and provide cachet to your reputation, not for loved ones with brain injury.
What are holidays like for ABI survivors? It’s to experience love as a blaming, shaming, abandoning, isolating gift we'd like to return.
Copyright ©2023 Shireen Anne Jeejeebhoy
