Clara sat in an aisle seat at the performance hall of the Hochstein School of Music and Dance, smiling at us, holding her sheet music, because she would lead off the evening’s program. Relaxed, she happily chatted with her mother, brother, sister-in-law, one niece and our adult children. Clara was about to walk onto a stage for the first time in decades and perform, but looked as if she had not a care in the world. I, on the other hand, was terrified.
A little after seven o’clock in the evening, following some introductory remarks by her piano instructor regarding that evening’s program, my wife got up, climbed a short flight of stairs and walked across the performance hall’s gleaming wooden stage to where two grand pianos stood, side by side. She arranged her three pages for the piece she was to perform, Friederich Kulau’s Sonatina in C Major (Op.55, No. 1), on her chosen piano’s music rack, seated herself, adjusted the settings for the bench, and then, after a brief pause, started to play:
How nice, right? Not bad for a 57 year old woman, who once upon a time had to choose between going to Julliard or an Ivy League school, and went with the latter option because she suffered from performance anxiety. But that video has a much deeper, and at times darker, story behind it. Standing alone, it doesn’t begin to tell you the true nature of the long and tortured path she took that led to her performing on that stage this past Wednesday night.
Here’s what you need to know about Clara, my wife and life partner, to understand why her piano recital was an amazing and, yes, miraculous accomplishment.
On July 29, 2006, Clara’s life was radically altered when a large section of her pancreas was removed because it contained a malignant tumor. Pancreatic cancer patients have a very low survival rate, but cancer did not kill her. In eleven days she will have been cancer free for ten years. That’s a miracle in itself, and one all of us, her family and friends, still count among our blessings.
However, what none of us expected was that her chemotherapy treatments would permanently and severely damage her brain. In effect, she lost her mind because an old chemotherapy drug, Fluorouracil, or 5-FU for short, which is used as an adjunct to radiation treatment, stripped the protective coating of myelin from billions of her nerve cells.
In Clara’s case, the damage occurred to a large extent in her corpus callosum, the “thick band of nerve fibers … [that] connects the left and right sides of the brain allowing for communication between both hemispheres.” As the 2008 study that demonstrated the neurotoxicity of prolonged term use of 5-FU puts it:
“[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.”
For Clara that meant that, within six months of her eight week course of round the clock administration of 5-FU, she began to show signs of short term memory loss and the inability to concentrate on work-related tasks. She had to take short term disability leave from her position as a senior diversity manager at Eastman Kodak. Soon, however, her condition became much, much worse.
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.
I have to admit, I had days when I thought she might be going mad as well. Days when I felt overwhelmed by what had happened to her, and ho those losses were affecting my family and myself. What follows are some excerpts from an email I wrote on November 29, 2009 to my doctor that I’ve never shared before. It was in response to his email regarding the worsening of my autoimmune symptoms, but it soon veered off into a personal rant about how hard it for me to deal with Clara’s worsening psychological and physical symptoms:
… I got yelled at this morning when I went to help her take her medications because it was 9:00 and she was crying. And by yelled I mean she ranted and raved like a scene from Sybil and it was pure hatred directed at me.
I was told that I was only helping her at my convenience. Where was I at 5:30 am? Of course I was in the same house … but my trying to help was “at my convenience.” I did not raise my voice, but her screaming and carrying on was exactly like the crazed rants I witnessed years ago from paranoid schizophrenics when I was a counselor …
Again, let me reiterate that I did nothing to spark this incident this morning. I only walked into the room in which she had slept when I awoke because of her crying. […] I only asked if there were specific things I could do for her (such as helping her take her meds — the Concerta and Provigil) and for that I was lambasted with pure fury and hatred. […]
She is clearly very depressed and her mood swings are rapid and increasingly unpredictable. Indeed this entire week has been one long series of mood swings from mania to severe depression to angry rages to uncontrollable tears to anxiety.
On Thanksgiving she started crying when she returned home after going out to eat at her sister-in-law’s family’s celebration (an event that by all accounts she had done well at and enjoyed herself; I was too sick to attend) because she was still hungry and depressed. So, sick and nauseous as I was I fixed her another meal at 9 pm.
When I did that she was all smiles just as when I do other things for her that she cannot do or will not do by herself — go to stores to pick up small items or to the pharmacy to pick up her medications because she is too overwhelmed to enter them on her own or bring her meals to her and wait on her hand and foot. […]
Why am I telling you this? Because I believe we are dealing with a non compos mentis situation. […]
I am not allowed to call Clara on the phone, only text her, and if I text too much I will be harangued and criticized for that. I cannot ask her about … any … topic [that] she finds too upsetting or overwhelming to discuss. I am supposed to be able to read her mind and know when not to ask a question or approach her.
Every day when she leaves the house [to spend hours alone in her car] I see a more and more disturbed and distressed individual. Her appearance is shabby, and gives the impression of confusion, despair and anxiety. […] Once she becomes confused or unable to remember she becomes agitated and anxious and I have to spend a lot of energy calming her down, usually while being berated for not knowing what she forgot or why she is confused.
I believe the medications she takes for her brain dysfunction … are having little effect on her mental functioning other than waking her up in the morning and slightly helping her better focus … for a few hours a day, at best. […] She displays periods of paranoia which are disconnected to reality.”
Looking back, I feel ashamed at the angry and selfish tone of that email, but it does provide an accurate description of my experience of being her caretaker at that time in our lives. Yet, how much worse was it for her, a brilliant woman in the prime of her working career, to lose so suddenly all of what gave her life purpose?
She could still remember the person she had once been. Her long-term memory remained intact, but she could not distinguish between relevant information from the irrelevant She experienced the world now as a constant stream of stimuli that often overwhelmed her. Our brains filter out such extraneous information every second when we work, play, shop, even watch a favorite TV show. Clara could no longer do that. New information now came at her too fast. Even simple conversations could confuse and disturb her because she could not keep up with the speed of the words other spoke to her. Neuro-cognitive testing revealed her reading level had dropped to the first percentile.
She spent many days writing in journals, not even knowing until she was finished what she had written. She once told me her fingers operated independently of her conscious mind. Where once the light shone brightly, now darkness occluded her ability to understand her world. I cannot imagine her despair, her anger, her frustration, her fear and her deep and abiding sadness at the loss of so much that made her unique and special – all stolen from her by one chemotherapy drug. And not least among the things she lost was her ability to play the piano, to make music.
Gradually, over time, with an acceptance of her limitations and a stubborn determination not to allow herself to be defined by her new reality, she worked hard to claw back from that abyss. Her doctors gave her no treatment options other than drugs, designed for use by people with ADD, narcolepsy and Alzheimer’s Disease. They provided only short term symptomatic benefits, and did nothing to bring about real improvement in her cognitive functioning. So, Clara, as she had always done throughout her life, took on a new project: herself.
Clara created her own method of rehabilitation. She moved into 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 for 6 to 8 hours a day, which allowed her to chart improvement in various cognitive functions. She searched online for anything that might provide an insight into her condition and how to improve it.
She continued writing down her thoughts in journals, but now she took the time to write carefully, slowly, and with conscious awareness of each word, each thought that she wrote down on paper. Her caregivers helped as well, as we all became better at understanding what she needed from us. In this way, she made some progress, but more was needed, something to help her integrate her mind and body and bring order where before only chaos reigned.
Then, unexpectedly in 2013, we found the help she needed. In my car on the way to pick up prescriptions I tuned into our local public radio station, WXXI, which was hosting a program regarding music therapy and the benefits it could provide to people suffering from brain injuries and other disorders. One of the two guests the host interviewed that day was Maria Battista-Hancock, the Expressive Arts Department Chair of the Hochstein School of Music and Dance, and a registered music therapist. I called the program and told them about Clara, and within a month Maria was working with her. She started Clara on relearning the most basic of skills: focus. Here is how Clara described it in her speech at a Hochstein fundraiser in April 2016:
“When I started with Maria, we were counting number of steps I could take before faltering while I also focused on my breathing. We celebrated when I reached double digits. When I started with Maria in 2013, I would have been unable to enter this room without becoming completely overwhelmed, disoriented, and in need to run from the barrage of stimulation that is here.”
Before long, Maria added instruction in dance and piano to Clara’s treatment program – dance lessons with Christopher Morrison, and piano lessons with Dr. Gary Palmer. Not that it was easy. Far from it. From Hochstein’s website:
“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.”
The improvement in Clara’s cognitive functioning now progressed rapidly. I saw it on daily basis. Her ability to interact with people, to control her emotions, and to concentrate all rose significantly. In March, 2014, Clara attended the Symposium, “Neurobiology and Neurology of Highly Skilled Motor Performance in Musicians,” where her story was presented, and she engaged in discussions with leading neuroscientists from around the country. She also attended the 2014 conference of the American Music Therapy Association, where Maria gave a workshop regarding Clara’s treatment, The Rewiring of a Beautiful Mind: Music Therapy, The Brain & LivingDance ~ LivingMusic..
The hopeless feeling we all shared that she’d suffered an irreparable brain injury from which there would be no recovery was being replaced by an overriding feeling of optimism and our joy at seeing a new Clara being reborn before our very eyes, not through drugs, or surgery, but through the hard work of a dedicated team of music and dance professionals and one very strong woman. In December 2014, she appeared on stage to in a dance routine with Christopher Morrison at Hochstein’s Winter Dance Gala, an accomplishment she would repeat in 2015.
And now, the impossible has been achieved: she played piano again, on stage before a live audience. Yes, the piece was not a long one, but it wasn’t easy for her. Clara still cannot read musical notes fast enough to play an extended piece of music. She learned Kulau’s Sonatina one part at a time. She didn’t read the notes on those three pieces of sheet music Wednesday evening. Instead, she used them in the manner of a cheat sheet. While playing, she glanced at certain highlighted portions to trigger her memory of the next part, and then the next until she reached the end.
The method was similar to how she approached the speech she gave at the Hochstein fundraiser in April 2016. She wrote her speech out the day before, but she was still not capable of reading it word for word. Instead, Clara printed a copy and highlighted in yellow certain phrases to help her recall the main points she needed to hit. And she pulled it off, even adding new material that was not in the prepared text. Hearing her talk that night, I fairly certain I was the only one present who really understood the degree of difficulty involved as she related her story to a jaded group of well-to-do prospective donors. When she finished, they all to their feet to give her a standing ovation, one that caught her off guard, but which now she can remember with pride. We later learned from the person responsible for the event that Hochstein raised more money that year than from any previous fundraising “gala.”
Which brings me in a roundabout way to the reason I am writing about Clara, other than my love for her and pride in all she had accomplished. You see, the drugs she takes, the ones that are helpful in that they speed up her brain transmission rate for brief periods of the day, did not bring Clara to where she stands now, a woman who has regained her confidence, her self worth, some might even say her soul. The cost of those overpriced drugs, however, are covered in part by our medical insurance. The rehabilitative program she receives from Hochstein is not. To pay for the services that have made a real difference in the quality of her life, she must rely in part on the Hochstein School’s own tuition assistance program.
In America, large pharmaceutical firms broadcast daily advertisements on television and radio, not to mention their online ads as well. These ads portray the drugs in glowing terms, but the truth is that they rarely deliver on the hype. And the potential side effects of ingesting so many medications are not insignificant. The list of side effects, which are required to be read on-air, are always recited while images of good-looking people smiling, playing with their children, dancing at weddings or otherwise participating in joyous activities, fill the screen.
I’m not saying the drug companies don’t provide products that often can make the difference between life and death for large numbers of people. However, many of their new drugs are no better than older ones. In addition they now focus on drugs that target “medical” conditions that in the past no one imagined would be “cured” by a pill (e.g., Viagra). These new types of drugs now provide a source of massive profits for their manufacturers.
Even in situations where a serious medical issue is involved, often there are other non-invasive treatments that can provide just as much of a benefit to patients, or which may help reduce the need for medicines. In Clara’s case, the rehabilitation program provided by her music therapist, dance instructor and piano teacher have been far more effective than any drug she takes.
Clara’s biggest goal in life right now is to use her own story as an example for other people like herself who suffer from significant cognitive problems, whether veterans who return from our overseas wars with Traumatic Brain Injuries (TBI) to people who suffer from debilitating diseases that affect the brain, to those who have long term neurotoxic damage resulting from chemotherapy. She is working with a graduate student on a book about her own rehabilitative journey.
If you are disabled or have a mental illness, it’s easy to fall into despair and hopelessness because our society, with it’s ethos of individual achievement and it’s constant focus on “winners” and “losers,” rejects so many of us. Consciously or unconsciously, many people in this country still look down upon the disabled and those who suffer from mental illness as weak, and not worthy of their consideration or sympathy. Worse, is the outright indifference to the plight we face. Our suffering is not a societal priority, just as the suffering of other marginalized communities is not a priority.
But I don’t want to end my wife’s story on a note of anger or frustration with our flawed society. I want you to take away from it the realization that good things, beneficial things, even miracles are still present in our world. So, for that reason I’m going to give Clara the last word on what her story is really about and the meaning you should derive from it.
“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.”
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