By Ian Hebeisen
During my junior year of high school, my dad picked me up after I finished play rehearsal. These car rides home became commonplace, except for one day in particular. I hopped into my dad’s van, and he started our usual car-ride conversation with the phrase, “Now, don’t worry too much….“
Obviously, this worried me. My dad explained mom was in a car accident that afternoon. It didn’t seem that bad – she was rear-ended by a young man who was texting and driving. Mom stopped at a red light, and, when the left turn arrow changed to green, the driver behind her – still focused on his phone – saw the cars next to him moving and drove forward. When mom saw the car behind her wasn’t slowing down, she instinctively locked her arms and braced for impact.
The accident seemed minor at the time. Both parties walked away believing they were fine. “I don’t really remember much of the aftermath,” mom said. She came home from the site of collision feeling lost in a fog. “It wasn’t until after we took care of the post-accident formalities I felt something was wrong.”
In the following days, mom started experiencing strange headaches located at the base of her skull. “Usually, my headaches were at the front of my head or from my sinuses. It took a long time to even figure out I was having headaches,” mom said.
Three weeks after the initial impact, we started seeing other symptoms unfold. Mom became rather ornery, and my dad commented on how easily she started to cry. Her emotions were heightened at the beginning, possibly from being in pain without fully realizing it or understanding why. She experienced lingering nerve pain in her arms and back. Tremors, spasms, and other movement disorders developed during this time, and debilitated her everyday life.
Her job grew more difficult for her as well — she worked as an early-childhood educator, and the fluorescent lights became overwhelming. When working with young children, vocal outbursts arose without warning. Too much noise triggered migraine-like headaches and increased tremoring. The job she used to love doing became an unbearable burden, and she struggled to pull through even a four-hour shift.
My two brothers and I thought the accident resulted only in a damaged bumper and repeated lectures on the dangers of texting while driving. Despite some obvious changes in our mother’s behavior and abilities, we thought they would be temporary, and we’d have our mom back to normal in no time.
Eventually, mom went in for a cervical MRI. This scan revealed a couple herniated discs in her spine. Upon discovering this diagnosis, she began treatment targeting these herniated discs. We all breathed a sigh of relief — we wanted an explanation for the changes we were noticing, and we finally had one. We figured once the discs realigned and healed, her problems would disappear.
However, as time went on, the damage showed little sign of letting up. She continued feeling pain and wincing at bright lights and sporadic sounds. It looked like this would become the new normal for us, until our family chiropractor noticed mom struggled to differentiate her left and right. The chiropractor, Dr. Andrew Luing of Dynamic Family Chiropractic, recently underwent training for identifying concussions, and recognized some of the warning signs in mom.
Dr. Luing referred mom to another doctor at Hennepin Health Care, where she learned she suffered a traumatic brain injury from the accident. By locking her arms to brace herself, she ended up not only herniating the discs in her spine, but rattling her brain in her skull.
She underwent another MRI at Hennepin Health Care (HHC) which revealed no physical damage to the brain. Her doctors were not surprised. “They told me any shearing of the brain for traumatic brain injuries can be so fine, it doesn’t register on the MRI,” mom said.
This news came as a shock. Nobody in our family had any prior experience with TBIs. Some of my friends sustained concussions in the past, but they never seemed to have a catastrophic effect — they would be out of commission for about a week, but then they’d be back in action. Seeing first-hand how serious the effects of a concussion could be caused quite a paradigm shift.
Mom started new treatments following the confirmation of a concussion. HHC wanted to put her on various medications, but she declined due to a history of allergic reactions to medicines. Chiropractic care proved beneficial at relieving headaches and reducing pain. In addition, Dr. Luing started other treatments including deep tissue laser therapy and decompression.
The TBI clinic instructed mom that she needed to quit working to focus on treatment for her condition. She began occupational therapy with a focus on speech and vision therapies to help retrain her memory, processing, and cognition, as well as ease her sudden stuttering. The family’s involvement intensified at this point. We assisted with her visual exercises and physical therapy at home, whether that involved holding up a sheet of paper with various numbers and letters or helping with stretches.
Unable to work, mom found herself a bit stir-crazy at home. She attempted to do chores, but with such a fresh injury, it didn’t take long for her to become overwhelmed and in need of a rest. We all adapted the way we approached chores to keep mom functioning as much as possible. For example, mom could load the dishwasher, but emptying proved difficult. “When loading, everything goes into one area, while with emptying, there’s a lot of cognitive processing to determine where dishes need to be put away,” mom said.
In time, they sent mom to a neuro-optometrist. In addition to her light sensitivity, she received five other diagnoses, including double vision and midline shift, a condition where pressure and swelling build up enough to push the brain off center.
The neuro-optometrist prescribed mom her first pair of glasses, and our family faced another side-effect of mom’s condition: wounded pride. The glasses contained prisms to correct the double vision, as well as blue tinted lenses to remedy the light sensitivity. At first, mom felt embarrassed by the glasses – to her, the colored glass accentuated her vision problems and hinderances. “It was bad enough I was moving and contracting, and now I had these blue glasses to draw unwanted attention from others,” said mom.
My dad gets the credit for selling mom on the new glasses. To boost her confidence, he printed a collage of celebrities who wore blue tinted glasses – Elton John, Robert Downey Jr., and so on – with the phrase “Now you’re one of the cool people!” and taped the pictures to mom’s closet. The role of caretaker involves so much more than opening doors and helping with chores. Finding ways to encourage mom and make her smile in times of trial proved beneficial to her journey.
We continued to gradually adapt to the changes in mom’s condition. Her symptoms fluctuated, and we altered the way we helped her in those moments. For example, mom always had minor allergies to preservatives like sodium benzoate, but after the accident, she developed additional food allergies – another side effect of her TBI that blindsided us. We began to read food labels more diligently, and modified our family meals to accommodate these changes in her diet.
When going on family trips, I usually try to linger at the end of the group in case mom’s movement disorder flares up and she requires an arm for support. My brothers tend to monitor the media mom takes in – if a song contains too much dissonance or a certain pitch that’ll send mom into contractions, they’ll take note and skip over it. With movies and TV, we alert mom if an upcoming sequence will overstimulate her with lots of flashing colors or fast-paced visuals.
We chauffer her around town. Driving requires a lot of focus on multiple moving parts, and can drain mom quickly. If she needs to visit a store or run errands, we drive her to help reduce her fatigue and relieve some of the chaos. When on longer road trips, we need to plan for days of rest accordingly to help mom regain composure and remedy some of her exhaustion.
One such trip involved a drive down to the Mind-Eye Institute in Northbrook, Illinois. Mom learned about the institute from the book The Ghost in My Brain by Dr. Clark Elliot, and reached out for help. At the institute, she went through a plethora of tests designed to analyze the way her eyes took in light, and how her brain reacted to visual stimuli. The Mind-Eye Institute prescribed a new set of eyeglasses, which they refer to as Brainwear™ . These glasses, no longer tinted, were designed to emphasize peripheral awareness, not just improve central eyesight.
In fact, my mother’s glasses actually don’t give her 20/20 eyesight at all. After her first appointment at the Mind-Eye Institute, mom explained their current paradigm. Basically, when mom’s systems get overwhelmed, her muscles contract because the central nervous system is trying to process too much information and attempts to pawn off some of the stress to the nerves in her arms. “The optometrists said I don’t need to see at 20/20,” said mom. “By decreasing my central eyesight, I’m subconsciously shifting to use peripheral eyesight, my brain doesn’t get overloaded so easily, and my muscles don’t stiffen as much.”
The Brainwear™ glasses help to rebuild neuralpathways, reducing sporadic movements and contractions. The improvement is gradual, but we’ve noticed fewer spasms and less stuttering. All of these symptoms still remain as obstacles that mom continues to battle, but the individualized glasses do help. Every few months, she needs an update to her prescription as she adapts to the changes. “I used to have tinnitus, but that unexpectedly went away with the peripheral eyesight glasses™,” said mom.
We continue to monitor mom’s reactions to incoming sensory stimuli. We’ll recommend she take breaks as we work on projects at home, and adjust tasks like chopping vegetables if it proves to be too taxing on her mind and body. All of our aid doesn’t entirely solve her issues by any means, but it makes her injuries more manageable. “It makes life livable,” said mom.
Despite all mom’s improvement, she still struggles with her condition, especially when doing something out of her regular routine. “My world has become very small and comfortable, and if I step outside that comfort zone, that’s when my symptoms flare up. I’m managing because I keep my activities very small, but if I push beyond that it flares up.”
For example, mom went out on a friend’s boat this past summer, and ended up feeling miserable. The light reflecting off of the shifting water overstimulated her brain, causing spasms and offsetting her balance. “I don’t realize how much I’m managing until something triggers it and the brain injury rears its ugly head. Or something overstimulates me and I start stuttering.” When she returned home, she went straight to bed even though it was still early in the day as an attempt to recuperate.
As much as mom has improved, she has a long way to go. During one conversation, she explained that a doctor declared that “he couldn’t cure me, but he could help me manage my symptoms”. It’s a frustrating process to partake in, but without our assistance, mom’s struggles would grow exponentially and become more taxing. Challenging as it may be, we’ve got to stick together as a family.
Some things to keep in mind as you assist your loved one with a TBI: chances are pretty good that some of their symptoms will linger for a long time. Stop trying to get them back to the person they were, start loving the person they are, and support them on their journey towards the person they can be with their treatments.
Little things can go a long way, and keeping an eye out for small acts of service to ease their symptoms can make their day much more livable. Remember to exercise patience – healing is a long and arduous process, and progress can recede as time goes on. Keep pushing forward, and things will start looking up. The ways you help your loved one mean more than you can realize.
Ian Hebeisen graduated from Saint Mary’s University in May 2020, earning a degree in Literature with a Writing Emphasis. Now living in the Twin Cities, Ian writes comics, graphic novels, and poetry. In his spare time, he enjoys playing board games with his family.
