Stacia Bissell

Five million people in the U.S. live with permanent, chronic, brain injury-related disabilities. I’m one of them. And it’s ongoing. This is the word I would say describes my brain injury best. There’s not a single day that the repercussions from my brain injury aren’t inserted somewhere, showing up with a teasing face that I am all too aware of.

No one plans a brain injury, yet it is one of the most defining moments in the life of a brain injury survivor. It happens in a flash, and life, as we knew it, is forever changed. It astounds me just how many people are affected by brain injury, and yet there is still such a mystery that surrounds it.

Twelve years ago, I was leisurely riding my bicycle on a New England rail trail when my bike flipped and I fell hard on my head and then slammed down on the right side of my body. In addition to some ugly contusions on my face and body, and one broken limb, I sustained a mild to moderate traumatic brain injury (TBI). I was wearing a helmet, otherwise my neurologist told me I might not be here. In an instant, the old version of me was boxed up and a new version began existing.

I don’t remember my day at work that day – where I was a newly appointed assistant principal in a busy middle school after teaching math for over two decades. I don’t remember the ten miles on my bike before I went down, or the hours in the ER. My first memory was waking up in my own bed with a colossal headache and a cast on my arm, wondering why it was there. My husband had to fill in the details.

In a short span of time, my aspirations of being a school principal, celebrating my golden wedding anniversary with my husband (my high school sweetheart and father of our three children), and continuing with a robust social life were essentially over. I lost my beloved career, friends and family started staying away, and my husband moved out. This happened to coincide with me becoming an empty-nester. I essentially found myself isolated, left alone to handle a home, yard, finances, and personal care, while being anxious and confused.

For me, and most people with a brain injury, cognitive problems may be the greatest barrier to returning to “normal life”. These difficulties involve memory, attention, social behavior, safety judgment, and planning and carrying out future actions. They affect a person’s ability to care for him/herself, keep appointments, complete tasks, or interact with people appropriately. At stake is a person’s ability to succeed in any aspect of life.

For me, I was a fairly good cook at the time of the accident, but making a grilled cheese sandwich was now beyond my reach. There were just too many steps involved. I had to relearn how to clean my house, grocery shop, read a menu, efficiently plan and sequence my day, and go out successfully in public. I learned how to manage short term memory challenges, debilitating headaches, and speech issues that arose from my TBI, and was given strategies through cognitive rehab for staying on top of unpredictable and fluctuating stamina issues, among other things. I still use the skills and strategies that I was taught during cognitive rehab, and while the number of my disorders and symptoms has not changed, the quality of them has improved due to the management of them.

My SLP/cognitive therapist told me that if I would stop fighting my injury, start accepting it, and begin working hard at managing it, I might recover more. I was scared enough to listen to her. Over time I became plugged into resources designed to help survivors like me understand their situation more accurately including the harsh reality that there are sometimes permanent limitations that at first may be too difficult to acknowledge. I turned to support groups, case management, and my state BIA.

My brain injury permanently changed things about me – my capabilities, personality, and my ability to work and socialize the way I used to. I have chronic symptoms that I manage every day. I conquer these symptoms most days, but some days are more difficult, and each day is unpredictable. Because of my TBI, I developed associated conditions that have complicated my recovery, which have increased my attention and resources on health care. Along the way, I found myself in a legal fight to sustain my long-term disability insurance due to the chronic nature of my condition. Imagine the fatigue and added stress – both emotionally and financially – of going through that with a brain injury!

The chronic, long-term effects of brain injury are wide-ranging. My list includes many executive functioning issues: challenges with memory, sequencing, cognitive stamina, initiation of tasks & responsibilities, noise & light sensitivities, chronic tinnitus, mobility issues, pain, migraines, anxiety, fatigue. Due to the unpredictable nature of BI, I personally create a Plan A, B and C for almost everything

And I’m a high functioning survivor.

At twelve years out, I’ve learned to exist with holes in my heart for some significant losses, hope for a decent future with the right environment and people in it, and pride for redesigning my life. Aside from traveling when I can to visit my three children who live all over the country, I am a brain injury coach, author, speaker, and educator. I have written much of my story in a chapter in the best selling anthology, Deserts to Mountaintops: Choosing Our Healing Through Radical Self Acceptance. Other snippets of my brain injury journey can be found in articles published in Brain Injury HOPE magazine. I’ve been a keynote speaker at a number of brain injury conferences and related functions, including hospitals, schools, and other non-profits; and I coach those living with chronic symptoms from brain injury.

Don’t get me wrong. Living with brain injury is not an easy path – it takes an enormous amount of time to gain your footing and find contentment with a life that veered – but there is hope and joy and light to be found.