Living with Brain Injury: A collection of insights we wish we had known along our journey with brain injury

“My brain is scrambled”, my husband sighs in frustration.

This is my cue to pause, step back, and reassess. Picturing Kyle’s overstimulated thoughts as a messy breakfast item is his lighthearted way of reminding me, “hey, I’m in here. I just need a little help sorting me out”.

While I would like to believe my work as an occupational therapist (OT) would make me a model spouse to a person living with a brain injury, I would be mistaken. Through assisting my husband with navigating living with a brain injury, I have gained small insights into caregiver burden, and grief that all the knowledge and training in the world cannot fully prepare you for.

Kyle is living with post-concussion syndrome (PCS- or mild brain injury) because of several concussions sustained during his time as a collegiate platform diver. PCS is a cluster of persistent symptoms a concussed person may experience, such as: problems with attention, memory, fatigue, sleep, headache, dizziness, irritability, or changes in mood or personality” (Kolakowsky-Hayner et al., 2010).

For those who experience a mild traumatic brain injury (mTBI), about 10-15% will experience any number of those listed symptoms chronically. Because these people may appear “normal” after initial recovery many struggle to manage the daily tasks and roles required for success in their environment.

In his junior year of college, Kyle sustained three concussions within roughly three months.

Initially he thought he had recovered, however, the repeated trauma within a short time frame left him with difficulty thinking, severe migraines, sensitivity to light, emotional instability, and difficulty managing his basic self-care. Life changed drastically. He medically withdrew from classes, moved back home for support, and began working with a concussion specialist. After several months of treatment and rest, he was able to return to school to finish his degree.  We got married, and started a new chapter in Tampa, FL. We both believed the worst had passed and things were “back to normal”.

As life progressed, Kyle still endured occasional migraines, light sensitivity, and difficulties managing stress, but he was able to maintain a full-time job, a new role as a spouse, and engage in several sports related hobbies. Over a year after his presumed “recovery”, things began to change. The migraines became more frequent, his stress management was at an all-time low, and his short-term recall was getting increasingly worse.

For example, he would stare at the oven for several minutes knowing he planned to heat dinner – but was unable to turn it on to get started. Headaches and constant ringing in his ears would keep him awake for hours at a time, and sleep was very hard to come by.  He was emotionally withdrawing from daily challenges and would often catastrophize the most basic of problems. Fear that this was going to be our ‘new normal’ began to overtake us…

We decided to seek out medical management from a concussion specialist…again. After the initial shock of realizing we would likely be “managing” Kyle’s symptoms instead of “curing” them, we came to the realization we could make some small changes in our daily roles, routines, and communication to make a big impact on our quality of life.

In addition to Kyle’s regular visits to his concussion specialist, he also utilizes an acupuncturist, chiropractor, and photobiomodulation (lasers!!!) therapy for ongoing management of his PCS. At home, we began focusing on simplifying daily routines, lowering stress, focusing on overall wellbeing, and prioritizing communication. We were able to persist, but not without the help of our family, friends, and professionals who offered their continued support and guidance.  It truly does take a village.

Nearly a year later, Kyle is continuing to work full time, play recreational sports and is a proud new dog dad. While we continue to evolve, we have grown throughout this process (and probably will continue to).

We have morphed into better listeners, more supportive partners, and are increasingly empathetic towards the challenges of others.

We are strong in our belief that if we keep an open mind and positive outlook, we can continue to be successful in managing the daily challenges that Kyle’s PCS throws at us.

With all of this in mind, Kyle and I would like to share some of the lessons we have learned along the way. Our hope is to encourage, inspire, and empower persons with BI, their caregivers, and the professionals who are fortunate enough to work with them.  There is space within BI for joy, connection, humor, and growth. According to Kyle, “you can always see the light in every situation… even if you are photosensitive”.

Tips – and a few guiding thoughts:

Slow down

“It’s hard to explain that you’re confused about why you’re confused… it doesn’t make sense.”  During the several times discussing points for this piece, Kyle would mention how hard it is for him to explain his symptoms, their impact, and the toll they take on his relationships, roles, and self-worth. Our advice is to slow down. Slow down when things get tricky… when your person with BI becomes overstimulated, stressed, and runs into a “mental block”.

I often tell patients and family members to double the amount of time you usually need for a task after injury. You must drastically reduce your commitments, expectations, and daily goals to provide the time needed to best serve your person and facilitate success. This takes lots of practice and even more patience.

I particularly struggle with this since I like to set goals far above what even a neurotypical person may be able to complete in a day. Through mutual patience, reminders, and constant support from our loved ones, we continue to work towards a healthy balance of getting what needs to be done finished while pacing things to allow Kyle to be successful.

Healing is not linear

Healing ebbs and flows.  One day may be 2 steps forward, while others may be one step backward. Kyle is at his best when he maintains a sleep schedule, exercises regularly, and has assistance with managing his daily stressors. I double check schedules, appointments, and provide reminders for various self-care things Kyle needs to do to keep moving forward.

With time, Kyle may need less support and oversight to be successful. One of the many things I do as a caregiver is to adjust the routine as needed to ensure Kyle’s success during the day. Each person’s brain is different, and every injury presents with unique characteristics that continually evolve as time marches on. What works for us may not for you, and that’s ok! A few strategies that have helped us along the way include checklists, identifying triggers that intensify symptoms, and limiting screen time.  Try ‘no TV Tuesdays’… it’s wonderful.

Ask questions, and advocate

Because people with BIs don’t have obvious physical signs, it’s important to recognize and advocate for your person. As Kyle’s mother best describes, “You feel completely discounted because people can’t see your injury. If you had crutches, you would give them a break.” While you do not need to go around shouting who has a BI from the rooftops (HIPAA, anyone?), it’s important that you educate, advocate, and openly discuss the challenges associated with BI as appropriate.

This could look something like researching public spaces with less stimulation or visiting at quieter times to reduce stress potential. It may also look like asking a restaurant manager for a quieter table, a doctor to provide a written copy of medical advice, or a cashier to be patient as you may need extra time to pay. In general, most of us want to be helpful to others and people do best when they’re well informed.  In those spaces that are not particularly comforting for a person with a BI, ask for accommodations – it can’t hurt!

It takes a village

Whether it’s a support group, online forum, or good friend who commits to regular coffee dates, finding support is key. Kyle finds support in mentors, his fishing and hockey buddies, and his most trusted friends. As a caregiver, I find mine in my sister, co-workers, and in reading other’s stories of overcoming and living with brain injury. Together, we find great comfort in our parents, spirituality, and our pets.

My mother-in law, Valerie, has been supporting Kyle’s recovery from day one. Her insights and encouragement help me to refocus on the important things by using her daily mantra, “we are choosing joy today”. Whatever support looks like to you and your person- find it, lean into it, and stay committed to investing in it. These will become the communities you cry with through hard moments and celebrate the victories.

Same team

It is easy as a caregiver to feel you need to micromanage each step of your loved one’s life. While this comes from a loving place, it is easy to get lost in this role and almost forget what your original purpose in the relationship is. Kyle often reasserts his independence in tasks when I rush in to “fix it” before he has even struggled. When it’s possible, let them try.

Allow self-efficacy – partnership and independence flourish within reasonable boundaries. We are thankful Kyle has recovered to the point of being able to work, drive, and function successfully within his roles with only minimal assistance, but we understand this may not be everyone’s story. We aren’t advocating for you to stop helping or supporting your person as needed, but we would like to challenge you to set goals toward the restoration of meaningful roles. This could look as simple as asking them to help fold the laundry, or as complicated as picking up milk on the way home from work. Show gratitude for the help they provide and remember you’re a team.

The ability to succeed alongside you will promote connection, confidence, and healing in all parties involved.

Put your own mask on first

You cannot help someone when you are not healthy. I cannot stress this one enough.  It’s hard to hear, and even harder to implement. As an OT, I work with family members and loved ones towards realistic plans for managing the burdens that come with caregiving. While caregiving can take any number of forms, one thing everyone has in common is the risk of burnout.

Initially when Kyle’s symptoms began to worsen, I put my own needs on the backburner.  I neglected both my physical and mental health and was not in a good place.  Several months ago, I went back to counseling to help me reorganize organize myself. We began our health journey, disconnecting regularly from screens, and decompressing from daily stressors. As a result of prioritizing my own health, and implementing one small change at a time, we are both better. I am better able to handle my own challenges while supporting his progress. Take the walk. Drink your water. Practice self-care and love. Ask for help when needed.

While living with brain injury is not something we would wish on any person, we are thankful for the lessons we have learned along the way. Finding joy and intimacy in each small moment and accomplishment has forged greater meaning in our relationships with each other and our support teams.

As Kyle continues his healing journey, we aim to grow in compassion, resilience, and understanding. We hope something from this piece may be helpful to you. We encourage you to use what is helpful to you and throw out whatever does not serve you.

Acknowledgement

This piece has been written in collaboration with, and inspiration from, my lovely husband Kyle:  who daily manages PCS… and being married to me. Both he does beautifully.

Hope Kennedy Blackwood;  MOT, OTR/L 

CITATIONS

Kolakowsky-Hayner, S. A., & Reyst, H. (2019). Glossary. In The Essential Brain Injury Guide, Brain Injury Association of America.

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