Concussion is an Invisible Brain Injury

The Walking Wounded after Concussion

By Rula Mufti

A scar would help

I sometimes wish I had a scar.  One that hugged the right side of my face, pink and ghoulish, screaming out that something tragic had happened to me.  It would serve as an emblem of pain so that others could hesitate when looking at me, might possibly feel for what I had been through.

Since my fall in April 2004 when the back of my head was introduced to the edge of a marble-like table, nothing has been the same.  The iron rail that faltered under the weight of my hand came crashing behind me adding to my injury. Carrying the burden of this pain in silence, I’ve come to realize that empathy is the least characteristic a traumatic brain injury (TBI) victim is given.

Others don’t see me

Dubbed as an “invisible” injury it is hard for medical doctors – let alone friends and family – to understand the severe side effects of a mild concussion.  The term “mild” is a fallacy that has robbed me of the right to heal adequately because I was unaware of the frightening decay of my brain that would come.  That, combined with constant denial and cruel comments like, “everyone falls” when I explained the accident, made it agonizing to accept rehabilitation. The signs of decline did not show themselves immediately other than forceful headaches.  It was days, then weeks and months later, when fatigue and muddled words became my new persona.

Finally diagnosed

Once diagnosed with “post concussion syndrome” by my primary physician, the fatigue, imploding headaches, bouts of confusion and flashes of irritation made more sense.  The first few months, I was suspicious of inevitable insanity.  I was able to taste the horror of what Alzheimer’s must feel like when leaving crowded malls left me unable to trace my car, let alone know my whereabouts. Sometimes in hysteria, I would look for a friendly face to guide me to safety and tell me where I was. Help me retrieve my car.

Words that once flew effortlessly became steel knots tied into the crevices of my brain. Faces I’d once known intimately became distorted. Coordination was impaired – lopsided and uneven. Somewhere a fuse inside the machine of life had been disconnected.

A lonely journey

The journey to recovery for brain injury victims can be a lonely one. Most of us do not mirror the expectation that others have of a person that is impaired – limping, babbling, drooling – thus we are left without proper supervision and guidance. Family members, helpless and suspicious of the extreme changes of behavior, are not sure what to make of the lack of focus, the short-term memory loss and the personality changes. There are colorful bursts of unexplainable anger, resentment and withdrawal. I was introduced to the depression that became my new partner in bed and often becomes the eager companion of TBI victims.

Not normal for me

Fall 2005, one year later, I was led to the right doctors after probing and insisting there was something “wrong” with me.  My neurologist had wanted to wait for six months, assuring me that 50% of TBI patients overcome their injuries and their symptoms typically subside.  It has never been difficult for professionals to diagnose me and shake their heads acknowledging the odd number of hours of sleep, the mincing of words and the lack of focus, but that was just the problem.  They related to my injury as if it were cold empty words in science journals.  Doctors assured me the two to four hours of sleep was all normal for a TBI patient, even after small errands.

In the end, I advocated that I needed speech therapy, throwing my fragile brain to the hands of a woman who taught me how to organize thoughts, calendars, train my brain slowly to make decisive decisions, and flag notes all over the house and car as a means to remember.  Sometimes I used warnings like: TURN OFF GAS APPLIANCES, or LOOK BEFORE YOU REVERSE!

The first time I went to the hospital for therapy, I felt ill at ease. Surrounded by TBI patients, I cringed and became judgmental.  I was not- restrained in a wheelchair, or slurring words like some of the patients coming for rehabilitation.  I was embarrassed that I looked fine.  Other than dramatic sunglasses I purchased in an attempt to shield the fluorescent lights of the hospitals and malls and a bit of a wobbly walk, you could never guess I was inured. I even thanked God silently that I was not like “them”.

It was not long, however, before I accepted that the injury had made me invisibly like them.  My natural instinct as a mother and my fighting spirit had been the instruments for my first year of survival.  Now it was time for professional intervention.

It has been four years and counting since the last time I was able to enjoy the sunlight that pours into my bedroom window.  My long narrow closet had once served as solace because its darkness kept the slapping force of the migraines at bay.  I had never had a migraine before this fall, never had mundane noises affect me as if they were sharp piercing cries.  The flashes of light on the right side of my face became warning signs of an impeding headache. The comfort of my pale hands wrapped around a toilet vomiting became routine.  Time meant nothing as days became intertwined with months, days into night and I continued sleep walking through life.

Family fallout

Mechanically, I took care of my children and my husband.  He became the victim of my injury as I screamed and tore at our relationship.  My children, then the tender age of five and three, asked why mommy slept, why they didn’t have play dates or other activities.  Guilt set in.  Silently my family and friends watched, helpless, as I stumbled with words, retreated from family gatherings and ultimately harbored the pains of living in my own cocoon of doom.

I learned through my team of medical doctors, all familiar with the crises of TBI patients, to cope with the side effects. I was given a cocktail of drugs to ease the pain, attain alertness and combat the depression.  Finally, with the right drugs and the help of brain injury services – things started to fall into place.  It was only then – with help – that I was able to map out a path to recovery with my case manager and my speech therapist and dedicated doctors.

Sometimes, when the cool air tickles the back of my nape, or when the sun sets peacefully along the horizon against the backdrop of my plush lawn, I wonder who that monster inside me is.  I rejoice that I can let tears of joy fall when I see my daughters laughing or cheering when mommy is riding a bike with them…although clumsy, I’m trying. I’m blessed to have reached a point of awareness of this devastating injury where I can muster the courage to talk about my disability and no longer linger in the domains of paralysis.

Becoming aware and helping others

Today, brain injury services, brief documentaries and brain awareness month, help to educate people about the different degrees of brain trauma.  I’m reaching out to those who stood by me and probed me to find my old self again.  Although I have buried the woman I was, I am emerging with a new sense of life and its precious gifts: time, rational, and most of all, love.

I also understand that the journey of becoming aware and helping others grasp the gravity of what I’ve been through is a long one.  I’ve learned to live with the disability, but at times it’s hard to tell your daughter why you constantly forget her at school, or rush back to grocery stores to pick up groceries purchased but left at the curb, or barely remembering how to drive home.

I shake my head thinking back on how I was allowed to drive in the early stages of my disorientation.  I was a potential hazard to myself and others.  My car had to be traded in after minor bumps and dings because I couldn’t align my parking or reversed instead of going into drive.  I had lost the connection for reasonable actions.

Every day is a new journey.  I have chosen to make my rehabilitation and the progress I’m achieving a testimony to others and a chance at hope for recovery, so others will not be alone during their walk of life.