By Sandor Slomovits
Ari Axelrod is 22 years old and nearing graduation from the Conservatory of Theatre Arts at Webster University, near St. Louis. Axelrod is tall, with short brown hair, and a quick and wide smile. He also has a three-inch long, half-inch wide surgical scar at the base of his skull. (More about that later.) His voice is vibrant and well-modulated, and his conversation is enthusiastic, dramatic, and intensely engaged, just what you might expect of a budding musical theatre actor. Born in Ann Arbor, Axelrod has had his heart and sights set on Broadway ever since he saw The Music Man in his junior year at Emerson High School. From that day on, he had a clear game plan. “From the moment I decided that musical theatre is what I want to do, I’ve had these goals … I’m going to go to college, I’m going to get my B.F.A., I’m going to move to New York, I’m going to audition. And if that doesn’t work out, I’ll get my M.F.A. and teach. That was the plan, it was working, I was on that road.”
Then, two years ago, Axelrod came to a bump in that road; more accurately, he was sidetracked by a roadblock so massive that it threatened to detour him from reaching those goals — and perhaps even any others. During his second week of school, while sitting in a voice and speech class, “All of a sudden the room started spinning. I don’t mean like spinning. I mean spinning! I could see the room spin, watch the walls move, I could feel the walls move. It was just about the most uncomfortable sensation … just absolute torture.” He went to an urgent care facility where a CT scan showed that he had a Chiari malformation.
Chiari malformations (as explained on the website of the National Institute of Neurological Disorders and Stroke) are structural defects in the cerebellum, the part of the brain that controls balance. Normally, the cerebellum, and parts of the brain stem, sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation (CM).
The doctor at the urgent care facility handed Axelrod a piece of paper that detailed the three types of CMs. Type one is treatable, type two leads to paralysis, and type three is not compatible with life. The doctor told him he had a type-one CM, and Axelrod remembers him saying, “I wouldn’t worry about it; I don’t think you need surgery. You have type one and it will never become type two — and type two won’t become type three, so don’t freak out. Get an M.R.I. and see a neurologist.”
The diagnosis instantly explained some lifelong difficulties. “I’ve always had problems with dizziness. Since I was little I remember not wanting to hang upside down on the monkey bars because it made me incredibly dizzy, and I thought everyone was as dizzy as I was. During my college auditions, on the dance portion, I had to say, ‘I don’t want you to have liability, because if I turn around myself three times I will fall to the ground. So I’m going to modify certain things, if that’s okay.’ Most schools said that was fine; other schools, not as fine.”
The diagnosis also clarified a number of additional mysterious symptoms Axelrod had been experiencing for several years. “Toward the end of my freshman year of college, I’d get this kind of tingling in my neck and my shoulder, and when I would look down, I would get tingling in my fingers. My movement teacher at the time said it’s probably a pinched nerve, gave me some exercises, and it went away. A few months later, I remember waking one morning and I couldn’t feel my shoulder and half my arm. I saw a chiropractor, I saw specialists, I went to a massage therapist, all sorts of people, and there was no agreement as to what it was. There was no solution, and it was getting worse.”
It was helpful to have the Chiari diagnosis, and mildly reassuring to Axelrod that he had a type-one — but there was more. The neurologist he consulted next said, “Looking at your M.R.I.s, there’s nothing I can do for you. You need to see a neurosurgeon.” Axelrod immediately set up an appointment for later that day. What the neurologist had told him did not sound like good news … and it wasn’t. When the neurosurgeon looked at the scan, he said, “You have a worrisome amount of protrusion for a Chiari malformation. A worrisome protrusion is five millimeters. Yours protrudes 25 millimeters. You also have a spinal syrinx, which is when your brain fluid goes into your vertebrae. That’s concerning as well.” In other words, surgery was the only option. The operation was scheduled quickly thereafter, for May 11, 2015.
“Throughout all this, my parents were always very strong. They let me freak out. They never freaked out — around me. They might have behind closed doors; who knows. I remember calling my mother and telling her the diagnosis, and she said, ‘Well, I’m in a meeting. I will talk to you later. Everything’s going to be fine.’ My brother, too, was wonderful … he educated himself on [Chiari malformations], shared everything on social media — he was very supportive. My family was very strong and allowed me to have moments of weakness, but also inspired me.”
At his final appointment the day before surgery, Axelrod mentioned his anxiety to his surgeon’s nurse practitioner, who tried to reassure him. “You have a better chance of dying when you get into your car after this appointment than you will during your surgery.”
“Much as I wanted to believe her,” Axelrod reflected, “it was a hard pill to swallow.” He was told his surgery would take four hours; it ended up taking nine. He was unconscious for more than twelve. But his recovery was fast. His operation was on a Monday; he was discharged on Thursday; and two weeks later, he was driving. Three months to the day after his operation, he gave a public performance at the Encore Theatre in Dexter, where he has previously appeared in the casts of several musicals. He had help in organizing the show from Tony Award winner Faith Prince and her business partner, Natasha Hause. “I attended the St. Louis Cabaret Conference in July 2015, and found a passion for the art of Cabaret. I also wanted to say thank you to everyone who helped make the scariest part of my life easier, and the cabaret was the most wonderful way I could think of to say thank you.” Earlier on the day of performance he had a scan that showed that the operation had been successful. And, as he said that night, “I feel better than I ever have. I call it the new normal.”
The hour-long cabaret show consisted of songs from a variety of musicals, interspersed with stories of his medical adventure. It featured guest appearances by a number of his friends and fellow actors. All the songs Axelrod picked to sing that night came from successful and often well-known musicals. At the same time, he chose many of them — such as “Something’s Coming” from West Side Story; and “Everybody Says Don’t” from Stephen Sondheim’s Anyone Can Whistle — because their lyrics were especially meaningful to him after his experience. The nearly full house, which included his family, friends, and many musical theatre fans, was deeply appreciative.
By the beginning of September, he was back in school in St. Louis and had been cast as a lead in the first musical of the season, Dogfight. “I’ve been dancing, doing all activities I couldn't do last year and doing more than I ever was able to do before, because I was always dizzy … I was always scared … scared to go in an airplane, scared to be in a car too long. Now that that fear isn’t there, I feel more grounded, more balanced. Even just holding a pose in ballet, or in yoga, I can hold it and not worry about falling. It’s a gift.”
But the last two years have changed the young actor in many other ways as well. “It was scary. It shook me. It really opened my eyes that you can map out your life, you can plan out your thing and everything might be going according to plan, as it should, and all of a sudden you collapse and find out you need brain surgery.”
It changed my view on how I go about living my life. I still have goals, but they’re much smaller; now they’re ones that lead up to my bigger goals. Before, my goal would be, ‘I want to get my B.F.A., I’m going to move to New York.’ Now my goal is something as small as, ‘I’m going to get out of bed. I’m going to go brush my teeth. I’m going to eat a salad for lunch today even though I want a hamburger. I’m going to call my grandmother.’ I feel like it opened my eyes to how much I missed. It was hard for me to really ever stop and take stock of where I was, because I was always looking ahead and doing and going and going and going. Now it’s much easier for me to say, ‘Okay, where am I at? What am I feeling right now? What do I want to accomplish in the next five minutes?’ Then I do that. Really, what it’s helped me do is live in the moment, instead of living five years from now, ten years from now. I’m still on track with my huge goals but they’re not at the forefront of my mind anymore.
Since the time of his interview with Sandor Slomovits, Ari’s health has been “fantastic,” he said, “100 percent.” This past winter, he traveled to Israel on Birthright (a not-for-profit educational organization that sponsors free ten-day heritage trips to Israel for Jewish young adults). His post-college plans include making a return trip to Israel and then moving to New York to start his career. Ari can be reached at firstname.lastname@example.org. For more information on Chiari malformations, visit www.ninds.nih.gov/disorders/chiari/detail_chiari.htm.