Finding My Words After A Medical Mystery

Once upon a time, I was the Book Lady. Little ones called me Miss Liz, teens knew me as the Book Witch, and, to adults, I was either just plain old Liz or “I heard you can help me.” For 10 years, my mornings started with the rattle of a brown truck pulling up to the back of the independent bookstore I owned in Broad Ripple, Big Hat Books. Seeing how many boxes of books my favorite UPS man, Rod, had for me was like counting presents under the Christmas tree. Small boxes held the special orders from the distributor but the much bigger ones—often 30 pounds or heavier—came from the publishing houses. Those were the highly anticipated new releases customers lined up for. Boxes were the store’s lifeblood, filled with food for the brain.

But not long after I closed the store, those boxes began to represent something else: fear.

In spring 2015, when I set out to unpack my belongings from Big Hat that had started to gather dust in my garage, the boxes felt much heavier than they had just a few months earlier. Worse, when I opened them, I was having trouble reading what was inside. I had read a book every day or two since I was a schoolgirl and even bound and carried my vocabulary words everywhere, like scripture handed down from on high. But now I couldn’t seem to focus or remember details from the previous pages. I dismissed it as my brain demanding a vacation; this was the first real break I had taken in 24 years of working intense hours, first in New York City, and then as a small-business owner in Indianapolis. I thought maybe it was burnout.

Within a year, my condition worsened to the point where I was stopping mid-sentence and struggling to find my words. I would shrug it off. Who hasn’t lost the thread in the middle of a story and felt a few uncomfortable beats before finally chalking it up to a senior moment? You laugh and press on. But I wasn’t a senior, and these weren’t just moments. I was 55 and my memory and words were escaping me with increasing frequency and speed, which seemed impossible for a Book Lady.

The doctors I saw couldn’t name my affliction. But each knew what it looked like.

A host of various metabolic, endocrine, and thyroid diseases. Bipolar and other psychological disorders. Early-onset Alzheimer’s. Parkinson’s. Dementia. Delirium. Spinal stenosis. Each suggestion was more frightening than the previous one. I was exhausted and stressed by hearing, “Let’s just wait and see where you are in another six months. Eat well, get plenty of sleep, and walk every day.” That was the main prescription. It is depressing knowing something is wrong and not knowing how to fix it. Factor in taking various medications for what it might be—along with their side effects—and some real crazy-making goes on.

I sent out distress signals in 2016. My youngest brother and sister-in-law invited me to come to their home in Sweden. We’ll figure this out together, they said. So I left for Stockholm without a clue that it was the beginning of a multiyear medical mystery tour that would take me from one doctor to the next and ultimately bring me back to my adopted home of Indianapolis.

In what became multiple trips to Sweden, I was able to rule some things out. My brother brought me to the renowned Karolinska Institutet (think Nobel Prizes lining the walls) where an extraordinary endocrinologist finally tamed my Hashimoto’s disease (low thyroid) I’ve had for decades. She ruled out all other endocrine and adrenal disorders that could be responsible for the brain fog, depression, and exhaustion. The specialist was so thorough that she had an MRI of my brain taken. It was all clear at that point except for the lesion from a transient ischemic attack, the “mini stroke” I already knew was there from a horrible car accident I had in 2010.

I started to use my brain. I carried a pocket Swedish/English dictionary on my long walks. My sister-in-law taught me to knit again. Counting while stitching exercised a new muscle. We got out in nature and hiked and swam. I seemed to be making small improvements.

One day, we were walking across the rocks of an island, and I froze mid-step. I couldn’t move ahead. Each foot felt like it was in a bucket of cement and my legs were too weak to lift them. I panicked and called up ahead. My sister-in-law came back and took my hand, asking what was wrong. That was weird, I said, not wanting to make it a big deal. But the episode spooked me. That sudden loss of control over my limbs was entirely new to me. But when I returned to the U.S., it became a random occurrence.

How could my legs just stop behaving? The legs I stood on all those years in the bookstore, that carried me around the world, up the Matterhorn, across Africa, through my beloved American West, anywhere and everywhere I wanted to go. I am a walking girl who was born and raised in New York City where 20 blocks equal a mile, and it’s always faster to walk than drive—even in heels. I used to follow my feet wherever they’d take me. Now I was telling them to catch up to the steps I had already taken with the rest of my body.

Following a devastating divorce and a move to the East Coast, I checked myself into a hospital in New Hampshire and spent two weeks being examined by the psychiatric department in spring 2017. By then, I was severely depressed and scared by the way I was acting. For days or weeks, I could be totally up and at it, behaving like my hard-charging self. Then, without reason, I could be out of it and barely able to function. I silently wept for hours on end. I didn’t have an explanation for the on-and-off weakness I felt in my legs. Or my lack of clear thinking. Was it all psychosomatic?

I begged the intake nurse for help. She asked if I wanted to hurt myself or anyone else. No. I just want to go sleep and not wake up, I said. I was admitted and medicated. I had to attend both group and one-on-one therapy every day. I partook in activities and life-skill classes. Twelve days later, I sat at a conference table with the assembled team of doctors. I was diagnosed with bipolar disorder. At last, I had a name to hold onto, a place to hang my hat, medicine I could take. I could explain.

My spiritual counselor told me, “You’re not bipolar, you’re just grieving.” I stayed positive and even applied for nursing school. We always need nurses, and I needed a new career. “Find a hole and fill it” had always been my strategy for work. Be useful, I told myself. Yes, it was a crazy idea, but so was opening a bookstore (and doing it in a town where no one knew me). When I believe I can do something, I part obstacles. 

So I managed to pull myself together and get in. I loved it, and, as a bonus, had to buy lots of books. Studying made me practice keeping focus. I did well with the written work and clinicals, but I had notes and a partner. Taking tests with only my memory to rely on was brutal. After the first year, I had to admit defeat and withdraw.

By December 2019, I’d had enough of being sick, so I moved to the storybook town of Newburyport, Massachusetts, where I had sailed competitively when I was younger. I hoped some good sea air would clear the cobwebs in my head. I stopped taking the psychiatric medicine prescribed after the visit to the New Hampshire hospital and felt great relief. Walking on the beach strengthened my legs. I tripped and fell occasionally, but it was a period of relative peace. Then COVID came and I spent most of the next two years indoors.

When it was safe to fly again in early 2021, all I wanted was to get to Indianapolis and see my son. I didn’t want to admit it, but my condition had worsened. I emerged from my COVID bubble walking with even greater difficulty. Just in time to break a fall, a leg would get the message from the motherboard and lunge forward, followed by the other, and jerkily settle into a side-to-side balancing act. I lurched headfirst in a drunken sailor walk as I reached for walls, the back of a chair, anything to steady myself. And I thought I hid it so well.

My dear friend Liz—friends call her The Other Liz—wasn’t buying it.

“What’s wrong with you?” she said with alarm as I made my way from the airport cab to the front door of her house where I was staying while in town. I hadn’t been to Indianapolis for two years and had forgotten how direct she is. She imitated how I walked, like a stooped-over gorilla waddling back and forth through the forest. I could see why she was so concerned.

“You need to see a neurologist,” she said, wagging her finger at me, hand on hip. “You were an athlete.”

She didn’t leave it.

“You had perfect posture.”

That hurt. I always prided myself on good posture. I promised to deal with the problem as soon as I was back on the East Coast.

I didn’t have to wait long. I went down on a street in Boston two weeks later. An EMT picked me up off the sidewalk where I collapsed. When a doctor applied sticky monitors to my chest, thinking I had suffered a cardiac event, I spoke up.

“Please, may I see a neurologist? My friend told me I desperately need to see a neurologist.”

“Is your friend a doctor?” the resident asked.

I needed to humor him. “She thinks she is.”

I told him about the trouble with my legs, the muscle weakness, the cement feet, how sometimes they would just lose contact and act on their own, or not at all, irrespective of where my body was headed. I told him my legs collapsed in the bathtub recently while I was taking a shower, and I landed hard. When I tried to get up, I couldn’t. My phone was in the bedroom, the towels were too far away to reach, so I sat there naked and shivering for hours until I was able to finally pull myself out. The doctor had me look up; I saw stars and lost my balance. Looking down, I was in free fall. He sent me to imaging.

The CT scan showed the ventricles in my brain were enlarged, the most obvious cause of the balance, dizziness, and cognitive issues. In addition to Parkinson’s and Alzheimer’s, something called NPH, normal pressure hydrocephalus, was mentioned as a possible diagnosis. I was admitted to the hospital for five days, but COVID had not only put the squeeze on beds but also on doctors, particularly specialists who could confirm a diagnosis. The plan was to get me stabilized and moved to a rehabilitation center where I would be safe until I improved, or the neurology department could see me as an outpatient for further testing. Appointments were taking up to a year or more. It was the same story at every hospital in Boston. I asked what I would be like in a year. The outlook was grim.

The hospital would not release me to go home alone without someone there to act as a full-time caregiver, so I was transferred to the memory-care unit of a nursing home where I would receive physical and occupational rehabilitation. It was not a cheery assisted-living situation like in the A Place for Mom commercials; it was my worst nightmare. All institutional doom and gloom, people lying in bed, waiting to die surrounded by stomach-turning smells and sadness. I could not handle it. I made it for one day and checked out against medical advice. My mother overnighted a cane to help me walk. I called the mover and asked them to come pack me up. I was moving back to Indianapolis.

In a momentary firing of my remaining synapses, I pulled the name of the one neurologist I knew in Indianapolis from the ether. A wonderful friend of the bookstore: IU Health’s Dr. Meredith Golumb, a pediatric neurologist. Kindly, she asked about my symptoms and said it sounded like normal pressure hydrocephalus, but obviously it wasn’t her arena. The neurologist I needed, she said, was Dr. Brooke Walls.

NPH is a brain disorder in which excess cerebral spinal fluid accumulates in the ventricles and puts pressure on the brain tissues, which leads to diminished thinking and reasoning, difficulty walking, and the loss of bladder control. The condition is often misdiagnosed as Parkinson’s and Alzheimer’s disease since it shares many of the same symptoms: progressive cognitive decline such as confusion, memory issues, distractibility, changes in mood and personality. According to the National Institute of Neurological Disorders and Stroke, it is most common in the elderly but can occur at any age.

In some cases, NPH is caused by other brain disorders, such as hemorrhage, head injury, infection, tumor, or complications of surgery. But in most cases, the cause of the fluid buildup remains unknown. NPH is one of the few causes of dementia that can be controlled or reversed with treatment. Left untreated, symptoms may worsen and cause death. The Hydrocephalus Association estimates that nearly 700,000 people have NPH, but only 20 percent of those affected will receive an appropriate diagnosis.

Dr. Walls examined me the last week of August 2021. She had me walk up and down the hallway outside her office. (She brought my attention to the shuffling steps I took to turn around.) I was instructed to go from a seated position to a stand. Then she did a battery of cognitive tests. She explained the treatment for NPH is a ventriculoperitoneal shunt that is used to drain off the excess cerebral spinal fluid. But to confirm her NPH diagnosis, I needed an MRI and a lumbar puncture, which I only knew as a spinal tap.

An hour after the needle was removed, I was practically giddy my legs were so responsive. I had not been able to walk without a cane for months, much less throw my legs off the table—I couldn’t even get out of bed without using a chair or my rollator in park to pull myself up. When I repeated the walking sequence for the camera, I felt a bit like Mary Poppins floating on air. A few days later, it ended. But that taste of what I might look forward to with treatment had me reexamine my paralyzing fear of brain surgery.

When I met the IU Health team of neurosurgeon Dr. Bradley Bohnstedt and advanced practice nurse Pamela Breedlove, I had a deep sense of calm. Their faces were partially obscured by masks, but they radiated trust. Bright eyes. Warm voices. Steady demeanors. Being kind and direct.

I was shown the MRI of my brain next to one of a fully functioning brain. The difference was stark. Where the other had ventricles that looked like clear rivers, canals, and inlets surrounding lush brain land, my ventricles were swollen thick in an ominous mass of darkness, a treacherous flood overtaking the terrain.

I presented with all three key indicators—gait, cognitive dysfunction, and urinary urgency to a lesser degree. Following my positive response to the lumbar puncture, review of the MRI, and Dr. Walls’s conclusions, Dr. Bohnstedt diagnosed me with NPH and said I was a good candidate for the surgery. There was a chance he could reverse the damage caused the last five years. Well, not all the way, but maybe enough.

The surgery itself is relatively safe, only about 90 minutes long, and it requires just one night in the hospital. The recovery time is about 10 weeks, followed by physical therapy. Depending on the response to the shunt, some people also need occupational or speech therapy.

Dr. Bohnstedt showed me a small device that had two pieces of delicate tubing attached to each side, a catheter, it was explained. One end is passed into the fluid cavity of the brain, and the other, with a much longer tail, is tunneled underneath the skin and into the belly, where the excess fluid is emptied into the area surrounding the bowels and liver. The device has a valve to regulate how much flow is going through it and what the pressure is.

The MIETHKE gravitational shunt valve that would be used for my surgery can be magnetically programmed, and it compensates for gravity. Standing up drains more fluid; sitting down, less. Too much or too little causes issues like bad headaches, nausea, and vomiting. Though small tweaks might become necessary, the shunt should last for the rest of my life.

When a hospital bed was confirmed, the eldest of my four brothers flew in from Los Angeles on short notice to be with my son and me. On November 9, 2021, I went into surgery. When my brother brought me home the next night, I was still a bit out of it, but by morning I sat up and swung my legs over the side of the bed before I had time to think to call for his help. A waking breath later, I registered what I was able to do. I was overcome with such intense appreciation. I did not know I was crying until I felt the tears on my face.

I was the Book Lady. My life is different now, but I am one of the lucky ones. NPH was diagnosed before too much damage to my brain occurred. I was a force at 100 percent; 65 to 70 percent of my former self might be just about right. That I can handle, and gratefully.