My Life in Brain Injuries

Between my junior and senior years in high school, I had a summer job as a gopher in a pathology lab located in the basement of a very small hospital. I was assigned the menial jobs no one else wanted to do – washing test tubes and pipettes; running tests on stool specimens using toxic chemicals. (It was before The Occupational Safety and Health Administration (OSHA) was established. I believe some of the tasks I was assigned would not go to a know-nothing 17-year-old now.) I learned a lot that summer – mainly that I definitely did not want to work in a lab ever again. I also learned – because someone ran a test on me – that the reason I was always so cold and tired compared to my peers was that my thyroid was under-performing. I started taking thyroid daily and felt significant improvement right away. I had more energy and I had less mental fog.

 A few years later, while in college, I was required to have a physical exam – mainly a chest x-ray – to start the public-school practicum phase of my student teacher training. I went to the HMO provided by my summer job. The appointment was with a physician I had never met before. Our interaction consisted of the following conversation,

No discussion; no tests; no followup visit – just his “educated” opinion.

Looking back, it’s easy to see the problems accumulate and deepen over the following weeks and months, but when the brain is not being fed properly, it can’t work well. I knew something was wrong and visited the student health services, on average, every three weeks. I went to them with a series of laments: weight gain, hair loss, extreme fatigue, constant colds and respiratory infections, and a couple of broken ribs I incurred from tripping on the area rug in my dorm room and falling onto an end table. (I had always been awkward, but this was a new level of danger since every stairwell on campus was made of concrete and I tripped a lot.) I saw either one or the other of two very young, inexperienced, but seemingly confident doctors who, no matter what my complaint, ended the visit with a new prescription for a broad-spectrum antibiotic.

Surprise! My condition did not improve over the school year. In fact, on top of continuing weight gain, infections, and clumsiness, I developed a form of narcolepsy. I was fortunate. I learned to discern when The Sleep was about to engulf me – I could feel my brain shutting down. It felt like there was a rolltop – like on an old oak desk but instead made from lead – tucked at the base of my skull and when sleep was descending, the top of the desk started rising from the nape of my neck, up over my occiput. . If I could stop what I was doing – cooking, walking, driving – before the rolltop got past the middle of my brain, I could safely fall asleep without endangering myself or others. On several occasions I awoke to a concerned passerby tapping on the car window, checking to see whether I was OK, slumped in the driver’s seat by the side of the road. No, I was not OK, but it didn’t occur to me what the problem might really be.

As is common among the brain injured, my response to others’ concern was generally one of embarrassment.

That year of school remains a blur. That I finished any academic work is remarkable considering the perpetual, dense brain fog I lived in. I was a terrible friend and roommate, incapable of any deep communication; unable to follow through on commitments.

One moment of clarity occured, just before the end of the school year, when I discovered a lump in my breast. After eight and a half months of less-than-helpful medical care, I knew not to take my new concern to the student health center. Instead, I made an appointment at a women’s clinic in the large city a two-hour drive from my college. It was at that clinic that I had a mammogram and sat nervously across from a physician who looked at me with great concern. He asked, “Have you seen a doctor lately?” I told him of the frequent visits, wondering what that would have to do with the lump. Had I taken too long to find it and now it was too late?

“Actually, Miss Lewis, I’m much less concerned about the lump in your breast than I am about the lump in your throat. I have a hard time believing a trained eye has looked at you and not noticed your goiter.” He took out a small tape measure and stretched it around my throat. “Seventeen inches!” Apparently, such an uncontrolled thyroid was a rare occurrence in their clinic. The doctor invited other clinicians in to line up and palpate my throat.  A parade of people took turns placing their icy fingers on my throat and directing me to swallow. A video camera was set up on a tripod and the doctor aimed the camera at my face and throat while he narrated the “obvious” signs of hypothyroidism: the goiter, the dry skin, and the ease with which I lost hair. (He had me run my fingers over my scalp and show the camera the resulting fistful of hair.) He pointed out that although it was a warm spring day, I was shivering and wearing a heavy sweater under a down vest.

It had been easy for his “trained eye” to recognize my goiter, but it took a lot longer to find the right dose of thyroid hormone replacement. Because of the extremity of my signs and symptoms, I was initially given a higher level of medication than my system required. Where I had been lethargic and apathetic, I became agitated and irritable. I felt like I was crawling out of my skin, and had trouble sleeping at all, but after a few weeks of prescription manipulation, positive changes became obvious: I returned to my previous weight. I wasn’t freezing anymore.  The brain fog dispersed, my mood improved, and I felt more engaged. Unfortunately, it was hard to process and find words to articulate what I had been through. I couldn’t make amends to roommates, classmates, friends, and professors. Consequently, many relationships ended on a negative note. It remains one of my greatest regrets.