Once upon a time, I met a special woman while we were both attending law school in Colorado. From the title, I imagine you already know the person about whom I’m writing. It’s the person I care about more than anyone else in my life, and tonight she is going to dance on stage for the first time.
But I’m getting ahead of myself.
It was December 1982, and as first year law students, our class had just completed our first final exam period. Not one of us had any idea how we had done on the only tests that would determine our grades for that semester, but in that moment no one particularly cared. Having survived one of the most stressful events in our academic lives, most of us experienced a state of euphoria. Personally, I felt a tremendous surge of relief and the need to blow off steam. Our Class President fortuitously had reserved the Dark Horse, a local bar in Boulder that catered to college students, for an “After Finals” party. Almost everyone there drank copious amounts of beer, cocktails or just straight shots of the liquor of their choice. I found myself wandering from one group of classmates to another, congratulating everyone I met and receiving their congratulations in return, and generally behaving like a noisy bunch of happy drunks. Very noisy, and very, very happy.
My memory is a little hazy, but at some point I found myself with a group of people who were discussing where to go next. One of them was a Japanese-American woman I barely knew, who had the biggest smile on her face I’d ever seen. I couldn’t stop staring at her. That smile captivated me. Even now, whenever she asked why I fell in love her, the first thing I mention is that smile. It just lit up the room. Her face when she smiles is still the most beautiful thing I’ve ever seen.
While I did my best impression of a love besotted character from A Midsummer Night’s Dream, a general consensus was reached that we should wander down to the Pearl Street Mall, and get something to eat, which I thought a marvelous idea. My only problem? I had no means of transportation. Well, I owned a small motorcycle, but the roads were getting icy, I’d never been to the Pearl Street Mall before — and did I forget to say I was fairly drunk? Fortunately, my future life partner to be, who hadn’t been drinking as much as I, offered me a ride. I accepted immediately. We would go on to spend the rest of the night together.
Around 10 p.m. or so, after a meal at some restaurant whose name I’ve long forgotten, I noticed that she was still talking to me. I can’t recall how the subject came up, but I remember we began talking about dancing. It turned out that she loved to dance. I hadn’t been a date in over two years, but bolstered by liquid courage, and that smile of hers, I somehow ignored my general fear of rejection, and on an impulse asked her if she would like to go out dancing with me. As in that very night. Well, perhaps magic really exists, because she said yes.
We ended up at what I referred to back then as a “Cowboy” bar, i.e., one where we could swing dance. About five years before, a female friend of mine took pity on me and my social awkward personality and taught me the basics of county swing dancing. With enough alcohol in me, I overcame my fear of looking like an idiot, and though she had to teach me how to lead, I’d finally picked up enough of the basic moves to not make a complete fool of myself. Which in hindsight turned out to be a very good thing.
Clara, on the other hand was a natural dancer, by far the best partner I’ve ever had. No matter what crazy or reckless spin or twirl or throw I would come up with on the spur of the moment, she managed to stay on her feet, and even made me look like I knew what I was doing. Trained from an early age as a classical pianist (she’d had the option to go to Julliard, but chose an Ivy school instead), dancing was what she did for fun. Any kind of dancing, from ballroom to jazz to folk, it didn’t matter. She belonged to several local dance clubs and loved learning new dances. Early in our relationship she tried to teach me a number of them so I could go with her, but soon discovered my innate limitations when it comes to rhythm. Despite my utter failure as her pupil, however, she still agreed to marry me. We tied the knot in 1986, and yes, we had a live band at our reception, and to paraphrase Rupert Everett, by God there was dancing!
Skip ahead twenty years to June, 2006. Our marriage, after some rough patches, was going as well as it ever had. I’d had to retire from the practice of law as a result of a chronic autoimmune disorder which led to numerous stresses to our marriage, both financial and interpersonal. Clara always used the word “partners” to describe our relationship, but there had been years when the fabric that partnership had been badly frayed. Yet, despite the odds, we’d managed not only to survive, but to come to a better understanding of each other. No longer blinded by the romantic illusions and expectations, we’d come through to the other side, our marriage strengthened, our feelings for one another deeper and our love more mature.
What came next, however, threatened to take everything we had away. Permanently.
Clara went to see the doctor because of recurring pain in her back. She’d had a cyst removed about five years before, and we thought this was likely a repeat of that. Our family doctor ordered a CT scan to confirm our suspicions. What that test revealed, however, was not cysts, but a tumor growing on Clara’s pancreas. Surgery was scheduled the day after our 20th wedding anniversary. We held each other in bed that night, and neither of us got much sleep.
Pancreatic cancer has a very low survival rate – at that time only 3% lived five years after their initial diagnosis. Clara did have one thing going for her to which she and I clung to like a life preserver, however. There were no signs that her cancer had metastasized to other organs in her body. The odds of survival are better for patients where the cancer is contained. The surgeon removed her tumor, most of her pancreas and her spleen.
What followed after that was a two month course of daily radiation treatments. In conjunction with her radiation, she received an old chemotherapy drug, Fluorouracil (a/k/a 5-FU) that was pumped into her body every twenty minutes through a portal just beneath her left clavicle bone. After her first round of treatment, she had another course of chemo, a different drug known as Gemzar, for approximately three more months. In March, 2007, after being told that the cancer markers in her blood were essentially zero, we celebrated. She was alive, after all. We had no idea that her struggles were just beginning.
What we did not know was that the chemo drug used during her radiation therapy, 5-FU, still remained in her body, acting as a literal ticking time bomb. We also didn’t know that research on the effect of 5-FU would shortly demonstrate that it destroys the connections between brain cells, or to put it in the language of medical science:
[S]hort-term systemic administration of 5-FU … caused both acute CNS damage and a syndrome of progressively worsening delayed damage. This damage was not self-repairing, and instead became worse over time. […]
Myelin sheaths are necessary for normal neuronal function. One key finding of the study was that clinically relevant concentrations of 5-FU were toxic not only for dividing cells of the CNS but also for the cells that produce the insulating myelin sheaths (non-dividing oligodendrocytes). The delayed damage the researchers measured was to the myelinated tracts of the CNS and associated with extensive myelin pathology. The findings regarding the speed of ear-to-brain information transfer may offer a non-invasive means of analyzing myelin damage associated with cancer treatment.
In layman’s terms, Clara’s brain suffered numerous short-circuits, the most damaging of which were neural connections between the two hemispheres of her brain. Myelin acts much like insulation for electrical wires. Remove the insulation and the circuits break. Destroy the myelin that protects your brain cells and the billions of connections in your brain suffer irreparable damage.
The damage came on slowly. At first she had difficulty reading, which she attributed to bad eyesight. She began to miss appointments at work, and her memory, especially her short term memory became severely degraded. Her ability to multitask and stay focused disappeared. She could no longer process information, and became easily overwhelmed when in large gatherings. Eventually, she went on permanent disability because she could no longer function at work.
Her brain, having lost so many connections, had stopped communicating with itself. For example she often found herself looking for her keys, thinking they were lost, when all the time she was holding them in her other hand. Far worse, she became angry and depressed at what was happening to her, the way in which the life she had so carefully constructed was disintegrating and there was seemingly nothing she could do about it. Her moods would swing wildly and her anxiety levels skyrocketed to the point she literally thought she was going insane.
For several years she would spend entire days alone in her car, often at a park, because that was the only way she could control her environment and limit the flood of stimuli that now came into her brain without any of the ‘filters’ that you or I rely upon everyday to allow us to function normally. Personal interactions with family members became strained. She would lash out at me, her brother, her mother and even her children. No one understood what was going on. Her oncologist simply ignored the problem, writing it off to the effects of the cancer. It wasn’t until one day when while surfing the web I came across the research study regarding the brain damaging effects of the chemo drug 5-FU, that anyone had an answer as to what had caused her cognitive dysfunction. However, we still had no answer on how to improve her cognitive function. Her primary care physician did put her on some medications used by people with ADD and Alzheimer’s Disease, but they only provided limited symptomatic relief, and then for only part of the day.
My wife is nothing if not stubborn, however, or perhaps better words to describe her are “persistent” and “determined.” She was devastated when a traditional brain rehab facility told her there was nothing they could do for her, because she was already performing at her optimal capacity. Most people probably would have packed it in right there. I know I probably would. Instead, after taking some time to come to grips with the fact she had no proven treatment options, she decided to pursue her own method of rehabilitation. She found herself a separate apartment, where she could have privacy and limit distractions. She began to try anything she thought might help her, including playing “brain games” on websites such as Lumosity. She began writing down her thoughts about her condition in journals. And then something unexpected happened. Call it another miracle if you like.
One day, after picking up some prescriptions for her, I turned on my car radio. It just happened to be tuned to our local public radio station. Two musical therapists in our community were being interviewed describing how they use music to help patients with autism, Alzheimers and other brain disorders. I called the program and spoke to them about my wife, and whether they thought they might be able to help Clara. They encouraged me to have her contact them. And then this happened:
At her first session … Clara brought an invaluable collection of self-biographical writings, some hand-written with intricate and colorful [symbols] of brain processes on them, others printed and polished. She shared about the love for her family, her past career accomplishments, her search for improved brain functionality, her sensory overload, her physical need to have more balance when walking and going down the stairs, and her desire for an increased overall sense of well-being.
In order to increase multitasking, decrease entropy, and improve integration of body and brain, her sessions have been focused on mindful breathing, body awareness, matching a simple to a more complex beat, dancing and moving to a pulse. The aim has been to stimulate the auditory cortex and hippocampus by engaging in listening, feeling the beat, and breathing with the music. The music and rhythm used in sessions have been used to stimulate the sensory cortex, and the primary motor cortex, one of the principal brain areas involved in motor function and dancing.
Clara had been a serious pianist beginning at age 5. She also taught herself to dance. Her past experience in expressive arts help to form and reinforce alternate neural connections to increase wellness. She uses expressive arts in sessions as a medium for exercising concurrent tasks or thoughts, and integrating body and mind.
“It is not the end that is most important—rehabilitation is the journey. I remain alive for a reason—to be useful in my existence. I can grow as an individual—I can be useful in this life. I have hope.” […]
There has been improvement in the rhythm of her speech. The length of pauses between expressed thoughts are shorter, increasing fluidity in her verbal communication.
Clara’s experiences … have provided a means for integrating her daily challenges into more functional and fluid processes. She describes music as a unified community experience where—like a common language—everyone experiences the same rhythm and emotion. In the same way, Clara needed the experience of a shared reality and rhythm in her life, because she thought she was going insane. Clara’s musical experiences are not only a metaphor for Clara’s need for integration, but actually the source of it. Her music therapy sessions use rhythm, dance, and breathing techniques to increase body awareness and balance, the ability to multitask, and recognize the passage of time through musical structure.
Now, several times a week my wife has sessions with a dance instructor, a piano teacher and her musical therapist. I’ve personally seen a lot of improvement in her ability to interact with people, to control her emotions, and in her ability to concentrate. And tonight, she will be dancing on a stage with her dance teacher, and all the members of her family, will be there to watch her dance, for herself, and for those who love and care for her.
I can’t wait to see her dancing, again. And I know that when she does, she’ll be beaming the big smile of hers for all to see.