My wife, Clara, gets her four minutes of fame

Hi everyone. This is a personal essay, so I'll try and keep it short. I've written about my wife Clara, and her struggles to overcome the brain injury she suffered from chemotherapy before, here and elsewhere online over the past ten plus years.

This week, one of the the local TV News programs did a feature story on Clara, as part of their ongoing series, "Someone You Should Know."

You can watch the video of what was broadcast about her story at this link for anyone who would like to see and hear her talk about her struggle to overcome brain trauma in her own words (instead of mine).

Clara has made great strides in reconnecting the damaged parts of her brain through music and dance therapy at the Hochstein School of Music and Dance - Expressive Arts Department here in Rochester. For some context, I'll briefly provide an excerpt some from my prior writings about her struggle:

Here’s what you need to know about Clara, my wife and life partner, to understand why her piano recital was, for those who know her well, 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” .

[...]

She could still remember the person she had once been. Her long-term memory remained intact, but she could not distinguish between relevant information that demanded her attention and irrelevant “noise.” She experienced the world now as a constant stream of stimuli that often overwhelmed her. [...]

... 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.

If you haven't heard story before and are interested in how music and dance therapy can help people with traumatic brain injuries, please read the entire essay "Clara's Miracle" either at the Medium link provided or at this link from my post at c99.

Thanks,

Steve

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mimi's picture

development after having been damaged by the chemotherapy she once was treated with. It's something we all need to know about and share among us. I am glad you gave us all the links and a repost of your original post here at C99p, which didn't sink into my conscience back then. I don't remember if I read it or not. I feel ashamed about it now.

Often I feel I don't understand well the health problems some of the frequent commenting participants on C99p suffer under. Any clear explanations of their conditions help us to be compassionate and friendly listeners. It helps us all as a community.

Thank You. Your wife's performance on the piano is miraculous understanding the background story behind it. My sincere respect and kudos to your wife and yourself. May she have many more happy dances and musical highs in her life.

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Steven D's picture

@mimi I just thought those who knew of her story would like to see her - if not in person - at least on video.

Thanks, Mimi.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

What an incredible recovery. What a miserable journey for her and you, but music is magic! I noticed that when visiting my dad in his nursing home. He was suffering from Parkinson's, died from it, and even when it appeared he had no mental response at all, music calmed him. The other elderly patients,even the withdrawn non verbal ones, would perk up and sing along when music was played. Hum. I wonder what will lure me back to this world when Im en route to the next: Judas Priest or Leonard Cohen?

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mimi's picture

@GusBecause
through her front teeth and it's one of the classical arias I always loved. My father then started to sing along, but always a half tone off; it drove my mom nuts.

This was what I heard when I was very young in highschool.
[video:https://www.youtube.com/watch?v=RnGJ3Z7BpUM&list=RDRnGJ3Z7BpUM#t=54]
This newer performance I like even more. What a talented singer Anna Netrebko is.
[video:https://youtu.be/nK7dFG0uKUw]

heh, everyone gets his avatar name from somewhere...
first time I read the lyrics in German... how good to understand this little sentence at the end, which says: "that's all, I am the neighbor, who was irritating."
Give rose

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Steven D's picture

@GusBecause has been full of ups and downs, but I wouldn't trade my life with her for anyone else. Thanks for the kind words. She deserves all the credit for working so hard to overcome this twist in her road shall we say.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

mhagle's picture

tragic, and triumphant.

Thank you for sharing this with us.

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Marilyn

"Make dirt, not war." eyo

Steven D's picture

@mhagle Appreciated.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

Mark from Queens's picture

Great story of Clara's perseverance and focus, and the power of the arts. Very inspiring! Thrilled also to see an institution dedicated to such healing. That to me is a very encouraging sign in society, the kind of thinking and direction we should be exploring more of.

Please let her know that, having met you and your lovely daughter, we now see an even clearer picture of what we love about you.

I'm sure you've seen this but it's another testament to the deep healing power of music, which I think still remains largely unharnessed by the medical industry. Because as the brilliant and inimitable Chris Rock said about the medical and pharmaceutical industries, "they're not going to cure anything. Why? Because the money's in the medicine...Sick people coming back over and over again for more."

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"If I should ever die, God forbid, let this be my epitaph:

THE ONLY PROOF HE NEEDED
FOR THE EXISTENCE OF GOD
WAS MUSIC"

- Kurt Vonnegut

mimi's picture

@Mark from Queens @Mark from Queens
(edited for the link to Chris Rocks). Wow. Smile Blows in your face ...
Now you made me search for songs with the theme of something blowing in your face and I ended up with Bob Dylan's Make You Feel My Love - When the rain is blowing in your face - And the whole world is on your case - I could offer you a warm embrace - To make you feel my love
ok, ok, ok, now I heard at least five different singers' performance ...including Adele's ... and the rain blew off ... my umbrella.

Thx. Mark, I have my fun with your comments and music offerings, which are lessons to me.

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Steven D's picture

@Mark from Queens Hope all is well with you, your wife and baby. Rachel and I still have fond (if soggy) memories of our meeting in Philly. Smile

And yes, people are quick to make light of the arts and arts education, but I feel more and more is it essential for our society. These therapies have done more for her than any medication given to alleviate her "symptoms." They actually provide benefits to help the brain mend broken neural networks and make new connections. No dangerous or possibly fatal side effects either.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

PriceRip's picture

          Is per the cliches "Life is a journey not a destination" (Ralph Waldo Emerson) or "Man plans and God laughs" (Yiddish proverb): I am continually amazed by how we survive and sometimes even thrive in this chaos we call Life. Of course, I suddenly think of Douglas Adams, "Life! Don't talk to me about life."

          We need more "Someone You Should Know." and a lot less of the other stuff on main stream media. In some ways I miss the old days of local programing before the medium became big business.

          Clara is a real treasure. Thanks for sharing.

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Steven D's picture

@PriceRip One thing the TV piece did not tell is that Clara is working with a graduate student to write a book detailing her case, and explaining how all the various approaches employed by Hochstein with Clara, from traditional music therapy, dance and re-learning to play the piano, have worked to develop new pathways in her brain to regain cognitive functionality. The hope is that it will provide a model for one alternative approach to helping patients who suffer from TBI (Traumatic Brain Injury.)

The other goal of such a book would, of course, be to show people with TBI that their situation need not be hopeless. As you may know, many TBI folks suffer from depression, and the rate of suicide is very high among that population. Anything that can be done to show them that they can still lead a meaningful life and that their injury is not necessarily irreversible and irreparable could be beneficial. So, I hope that the book someday becomes a reality.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

PriceRip's picture

@Steven D
          The book is such a good project on so many levels. I am very glad to know this is in the works. PTSD is a manifestation of brain (as in physical) injury. The "beautiful" part (if such a concept can be applied here) of what Clara, your family and you have been forced to endure is getting to know those that have been able to help. I don't know about your take on this, but I wish I lived in a reality wherein I could be ignorant of such matters. But the universe didn't provide the easy way, and I do so dislike the "find a silver lining" approach to life.

          The unfortunate truth: Many with undiagnosed brain injury suffer isolated and unaware of options for help. Thank you for keeping hope alive.

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Alligator Ed's picture

But the effects are obvious and devastating. Steven, your wife, yourself and your family are admirable in your mutual perseverance, love, and support of each other. Brain injury is often a family destroyer, not just an individual destroyer. Having seen dozens of brain-injured patients, I can well-appreciate the effort, time and devotion invested by you all in this process.

One piece of music I find most uplifting is Mahler's Second Symphony, "the Resurrection". Have you heard it?

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Steven D's picture

@Alligator Ed But it was a team effort by Clara, myself and especially my two children, who often played a larger role is helping Clara through some of her roughest patches than I or anyone else could. This was especially true with respect to my daughter who played a major role, even as a middle-schooler and later in high school in being both an advocate and as the one person who could calm Clara down when she was at her worst.

I feel very fortunate that our family weathered this crisis over the years and became (sorry for the HRC reference) stronger together.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott