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What a 'Setback' Means in My Life With a Traumatic Brain Injury

Recently I was accidentally whacked in the head with a frisbee at the dog park. Now this may sound funny, and it most likely looked funny to those who saw it from a distance. But for someone recovering from a traumatic brain injury, it was not funny at all.

Since the original¬†TBI¬†five years ago,¬†I have repeatedly been warned¬†by my neurologist, vestibular therapist¬†and neuro-optometric doctor to avoid jolting or hitting¬†my head again.¬†This has¬†meant implementing many precautions and lifestyle changes. I gave up running and¬†biking. We don’t¬†go¬†dancing anymore. I avoid crowds for a variety of TBI reasons, and¬†don’t stand near people in public.¬†I can’t drive anymore because of visual¬†complications from¬†the TBI, and¬†I also¬†try to avoid getting into¬†vehicles. We sold our house in the burbs to move¬†to the city so I could walk to places and regain some independence.

But no matter how many lifestyle¬†changes and precautions I implement, sometimes life throws in the occasional accident. Such accidents turn my TBI recovery¬†life upside down. Just when I have made successful¬†progress¬†in my rehabilitation, an unexpected¬†event¬†occurs and pushes me back in time. In TBI¬†recovery, this is officially labeled a “setback.”

Setbacks mean my thinking¬†becomes foggier and scattered. My¬†short term¬†memory is slower. Extreme fatigue¬†and a decreased¬†tolerance for noises and¬†visual movements sets in. Auditory¬†processing¬†is fuzzier and new learning is¬†confusing. I can forget to eat. I can forget to shower. I forget¬†what I’m doing while I’m doing it. Interruptions¬†become frustrating¬†mental detours. Familiar routines¬†feel like running¬†marathons. Rest is as inevitable as the breakthrough migraines.

Intentional¬†isolation and selective¬†interactions with others are¬†necessary. The entire pace of my life slows down. Day by day, I try to balance what I can actually do with what I used to be able to¬†do just the day before — all the while¬†making apologies to those who get caught in the crossfire.¬†Setbacks feel bad enough for the person who has them. But they also impact those who love the¬†person with the setback.

Luckily my husband is an excellent cook and caregiver. After five years, he has learned that a setback means he gets less of the functioning¬†me and more of the TBI me. He backs off from our¬†normal conversing and tries to be patient. We change our¬†plans to¬†give me more quiet time.¬†¬†He does extra cooking, extra errands, extra reminders to eat, extra laundry, extra everything. He’s become accustomed to this rollercoaster, but he often misses me when a setback happens.

And then there’s Harry.

An unexpected setback is better with a friend. Art by Lisa Katharina.
An unexpected setback is better with a friend. Art by Lisa Katharina.

Harry is my service dog in training. During a¬†setback, he too gets the short end of the stick. Harry doesn’t get to go¬†to the dog park in the morning. This may not seem like a big deal to you, but it’s a huge deal to Harry. Harry lives to run free to¬†play ball at¬†the dog park. Chasing balls with his friends¬†and playing fetch at the park¬†are Harry’s biggest rewards for working hard.

Instead, we play ball alone¬†in the short hallway of our apartment. I try to arrange for him to have playdates with a canine neighbor.¬†I curtail our¬†long walks together. Sometimes I don’t even walk him. The dog walker¬†or a kind neighbor will¬†substitute. Harry is typically a happy dog, but when his routine changes and his momma isn’t working with him,¬†Harry just isn’t as happy.

With the help of a cognitive-behavioral therapist,¬†I am trying to perceive setbacks as my brain’s way of taking care of me while it responds and¬†rewires,¬†rather than yet another frustration of¬†TBI¬†recovery. ¬†If setbacks are the antagonist in a TBI recovery, then¬†my caregiving¬†husband and¬†friends are the protagonists.¬†On this lonely road, they are the ones helping¬†me become¬†the Comeback Queen.¬†Harry’s a protagonist as well. He¬†takes the sting out of the isolation. Whenever he sees me feeling down¬†during the setback, he does the happiest¬†thing he knows. He brings me a ball.

Art by Lisa Katharina.