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An Actor’s Notebook: ALS Belongs to Everyone

In the Civic’s production of 33 Variations, a professor faces a debilitating disease

By Susan Domer

Fort Wayne Reader

2015-03-19


33 Variations, a magnificent play by Moisés Kaufman and directed by Gregory Stieber, is about passion, research, investigation, inspiration and dedication to music, the love of music and the complex relationships in our lives. And, it is about illness. Dr. Katherine Brandt (Julie Donnell), who is terminally ill with Amyotrophic Lateral Sclerosis (ALS) is researching Beethoven’s inspiration for the 33 variations he composed on a simple waltz by Anton Diabelli. Beethoven (Stuart Hepler), the subject of her research paper, suffered through miserable health throughout his life, eventually losing all of his hearing.

I play Dr. Gertrude Ladenburger, the German archivist who takes care of Beethoven’s original works on paper and is in charge of one of the most important collections in the world. She becomes equally impassioned about the subject matter and Katherine’s health. As a result, she is determined to help her friend finish this project.

The driving force behind of our story, the hideous neurological disease Amyotrophic Lateral Sclerosis (ALS), came to some prominence last year during the Ice Bucket Challenge on social media making more people than ever aware of its cruel assault on the body. How cruel? Think Stephen Hawking, the great theoretical physicist, crippled and twisted in his wheelchair, all muscles and joints slowly locking up as his body became virtually paralyzed, including his tongue, leaving him at the complete mercy of his caregivers.

Think Lou Gehrig. How frightening that in 1939 one of the greatest athletes in the world contracted a disease so mysterious at the time and so devastating to the body that the world didn’t know what else to call it except “Lou Gehrig’s Disease.” Gehrig’s retirement speech is one of the greatest speeches of all time. Not exactly sure of how this disease would decimate his body and life in the short time he had left, he told the sold-out crowd at Yankee Stadium, “Yet today, I consider myself the luckiest man on the face of the earth.”

During rehearsals for this show so focused on illness, I had an asthma-like bronchial episode that I inadvertently left untreated, thinking it was just a cold. Ooops. This turned out to be a major miscalculation on my part, calling into question if I would be able to continue in the rehearsal process. Suddenly illness had come home to roost. In fact, I could not recall the last time I had been so ill.

I’m never really sure how the acting journal I keep for each show will turn out until it all unfolds during the rehearsal process. Now I had wracking coughing episodes, zero appetite, weight loss, flagging stamina, and exhaustion. My prescriptions filled a small sack and days became measured by what needed to be taken when. I had become mired in nagging health concerns during a show with a theme of deterioration of one’s health. How curious that now I had become part of my own race against time as I struggled to fulfill the commitment I had made to the theatre. Opening night was looming!
As an actor, I don’t need to experience everything my character goes through to bring it to the stage, but each of life’s challenges or observations is a deep well of reference material for me. I find myself lingering longer than socially acceptable in some situations to “soak up” the dynamics between people, the ways in which they interact or attempt to control, manipulate or exacerbate a situation. I find these sometimes uncomfortable forays into human experiences and interaction “fun.” Being sick, however, during rehearsal was far from fun, but I had to figure out a way use it in the process. That’s what actors do.

I chose to see my illness as a gift, bestowed on me at the perfect time. I developed an immediate empathy with Dr. Katherine Brandt, the musicologist in our story saddled with ALS, who fights fiercely to overcome the disease that is preventing her from completing her work. I too was trying to finish my work in this show. My compassionate view into Beethoven’s world, one where he suffered every conceivable, debilitating ailment in the early 1800s, all while losing his hearing, was so enriched. How triumphant that he was able to craft his greatest masterpieces after he had gone completely deaf, free from the fear of deafness and able to revel in its clarity. He was a genius.

I also have walked away with a more complete picture of a great man who ran a glorious, yet all too brief race, as he fought to finish his life’s work. Lou Gehrig was one of the greatest baseball players of the early 20th century and over time we came very close to losing sight of him as an incredible athlete and came perilously close to remembering him only as a disease.

Since I have started working on the show, I have been amazed how many people know someone who has been afflicted with ALS. The more conversations I have, the more the list grows. I hope in some small measure our cast and crew will be able to help continue the discussion about Amyotrophic Lateral Sclerosis (ALS), casting aside references to “Lou Gehrig’s Disease” and wiping that phrase from our lexicon. This disease does not belong to Lou Gehrig. It unfortunately and forever belongs to all of us.

For more information about ALS visit alsa.org.

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The Fort Wayne Civic Theatre presents 33 Variations
Auer Center Arts Lab
300 East Main Street

Friday, March 20 at 8 PM
Saturday, March 21 at 8 PM
Sunday, September 22 at 2 PM — matinee
Friday, March 27 at 8 PM
Saturday, March 28 at 8 PM
Sunday, March 29 at 2:00 PM — matinee
Thursday, April 2 at 7:30 PM
Friday April 3 at 8 PM,
Saturday April 4 at 8 PM.
Tickets: $26 Adults; $22 Seniors; $17 Age 23 and under

Prices include ArtsTix Box Office fees__For tickets, call (260) 424-5220 or go to fwcivic.org

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