Brain Injury on Both Sides of the Fence

Professional to Patient

By Lois Bousman 

The seizures changed my brain

 I’m a daughter, a retired military wife, a mother, a registered nurse, an advocate for the disabled, and a traumatic brain injury (TBI) survivor. I’m a caregiver who has now experienced life on both sides of the fence.

I understand now what I had only observed before. The anger, fear, frustration, and uncertainty that come with a sudden illness or disability. That sudden loss of independence, the onset of financial difficulties due to job loss, and the depression that accompany them both.

Jan. 19, 2001 my life and that of my family seemed to come to a screeching halt. I was sent home from the hospital where I was working the neurology unit after a physical therapist noticed I was behaving in a manner unlike myself. She said I wasn’t verbally responsive, I froze in place, and just stared off into space. Whatever occurred didn’t last long. But rather than assist her as I had been doing earlier, I just returned to my nurse’s station when it was over to continue whatever I had been working on.

Two months later, after all the EEGs, MRIs, CT scans, and PET scans, I was diagnosed with complex partial seizure disorder. My neurologist at the time told me it seemed some neurons had migrated into both of the temporal lobes and destroyed tissue. Suddenly I had to follow the same instructions I had been giving to others just 2 months before. I had officially crossed that fence and it hurt.

Learning about a new “ME”

What had been a life full of dreams, goals, and laughter seemed to no longer exist. I couldn’t be “me” anymore. The seizures became more frequent. I had lost my independence and had to rely on my family more and more to help with tasks considered unsafe for me to do. With each new limitation, I wondered if I would ever get to cross back over that fence. At times, I gave up hope.

I’ve listened, researched, and learned about my disorder. Most people are familiar with those once called Grand Mal, Petit Mal, and even the Dropsy of the past. Mine is different. The only way I knew that a seizure had occurred was when I accidentally cut or burned myself in the kitchen. Or I would find myself in another room wondering why I was there. Most people may not realize when I’m just standing there staring that I’m possibly having a seizure. Like them, I don’t know.

But my husband and sons know when they see them. Initially the seizures were up to 20 or more per day. They tell me those were obvious to them. I would clench my hands, stare, and not answer them. I did not have a clue as to what I was listening to, or doing during the event.

Drilling into my head

In March of 2004, I underwent intra-cranial monitoring. I went into the hospital with long red hair. I came home bald after an 18 day stay, 20 holes drilled into my head, and wires inserted directly into the tissue of my brain. My sons described my head as a cross between a baseball and golf ball because of the incisions and holes. I don’t recall a moment of my in-patient stay. I only know the surgeons found exactly where to go in to remove damaged temporal lobe tissue. My neurologists were able to get an even better description of my seizures and the number I was having.

In July of 2004, I had a right temporal lobe craniotomy. (This time I came home looking like a horse had kicked me up the side of my head.) The neurosurgeon removed damaged tissue on that side. He took away some memories too. Memories of past events. Memories of childhood. Memories of being a young parent, memories of people, and memories of music. Since there was less damage to the left temporal lobe, they chose not to do anything at that time. Almost 4 years later, that side still is intact.

Holding onto some memories

What never left me were my memories of being a RN. The memories of caring for so many others with both brain and physical injuries. I never forgot how hard I fought to locate resources needed for them to survive. I never forgot how much I believed that, “There’s no such thing as can’t or won’t”, especially when it came to a child.

I admit that there are still times I have problems with memory and comprehension. I leave myself lots of notes, and keep a steno pad nearby so I have a growing list of items to get from the grocery as I notice something is needed. I can pay bills and balance a checkbook down to the penny. It’s amazing what you can do just by using varying colors of pens.

It’s been 4 years since the surgical procedures. I’m driving again, but only on clear days, never during inclement weather, never during high traffic hours, and never for a day or 2 following a seizure. I have yet to attempt the interstate and stay as close to home as possible.

Finding myself again

I’m beginning to feel like myself again. I’m a member of a vocational rehab clubhouse for brain injury survivors. I’m an advocate for survivors, and I’m working with the Department of Rehabilitation Services in hope of returning to my career field in a different capacity. It would be unsafe for the patient and myself to return to bedside care. Whatever I do, I know it is going to be focused on fighting for the needs of others.

I’ve experienced life on both sides of the fence. I have a better understanding now. I’m ready to continue to fight for the benefit of all.