Arthur Wooten is an author who suffers from bilateral vestibulopathy with oscillopsia. Recently he shared with VEDA the inspiration behind his most recent book, "Dizzy: A Fictional Memoir."
VEDA: Without giving away the punch line, can you tell us generally what your book is about?
AW: Dizzy is a fictional story about a Broadway star, Angie Styles. At age forty she’s what the theatre world calls a triple threat: she can sing, she can dance, she can act. And the world adores her. Suddenly, her life is turned upside down when she develops a severe balance disorder and within a matter of weeks, her stage career is over. She’s eventually diagnosed with bilateral vestibulopathy with oscillopsia. We travel with her on an incredible journey as she learns to cope with this diagnosis and eventually reinvent herself and a new career.
VEDA: You’re a fictional writer, but this book is based on personal experience, right?
AW: This is my story on so many levels. I was an actor for years before segueing into my writing career. I thought of writing Dizzy as an autobiography but honestly, I don’t think my life is interesting enough. Maybe because of my acting career and now being a writer of fiction, I saw a much more engaging and educational story if I told it as a “fictional memoir”. Writing a story around Angie also made the stakes higher. She could no longer do what she loved to do and which paid her bills. As a writer, I can continue to write. Granted, I have to take many breaks while working because it makes all my symptoms worse, but I didn’t have to reinvent myself. I’m also a shiatsu practitioner. For those who don’t know what that is, it’s like acupuncture without the needles. We use our hands – like acupressure. In fact, I’ve been a practitioner now for 28 years. The bodywork is done on the floor, on a mat, so even at the beginning of my balance problems, I could still work. I actually think the shiatsu has helped in my rehabilitation. It was tough to do, but it kept me vital and determined not to let this situation destroy me. I truly feel for those out there that do have to quit their jobs and find some other way of surviving.
VEDA: Tell us about your vestibular condition.
AW: Just like Angie, I have bilateral vestibulopathy with oscillopsia. In 2005, a virus went to my brain without me feeling a thing and it destroyed the workings of both of my inner ears. As many of the members of VEDA know, one of the jobs the inner ear does is to relay information to your brain, letting it know where you are in space. Well, I’ve lost that ability. I have no sense of balance. Ironic for a former dancer and gymnast. Every step I take in life, actually every movement of my head, feels like I’m bouncing on a trampoline. And it never goes away. On bad days it feels like I’m dropping in an elevator or walking through life on a waterbed. That’s the vestibular part.
The oscillopsia is my brain forcing my eyes to lock onto objects to get a reading as to where I am in the world. It needs to know whether I’m upright or upside down or sideways. Whether I’m turning, standing up or sitting down, it has to get a reading or I just fall over. My brain has no idea where I am. And it’s stubborn. It makes my eyes stick on objects and then they will jump to another very quickly. So I see life through an erratic handheld camera. Think bad indie film. Speaking of films and TV, while watching movies or shows, my brain thinks I’m in them. Action pictures are real tough for me and afterwards it’s almost impossible to walk for a while. And stress, adrenaline and change in barometric pressure wreak havoc with my symptoms. Even word retrieval can be affected. Not a good thing for a writer.
VEDA: When did you decide to write a book about your condition?
AW: Actually, I first wrote Dizzy as a screenplay in June of 2010. I had signed a contract with a production company to have two of my other novels made into movies, Birthday Pie and Leftovers. Once the producers knew of my “condition” they asked if I would consider writing a film about it. Five years had gone by since my first symptoms and I felt I could write the screenplay without falling apart. But it still was a really emotional rollercoaster for me. Cathartic to say the least. Unfortunately, the production company went bankrupt during the recent economic crisis and everything fell apart. That’s when I decided to novelize the story. And honestly, it’s a better read now. I found more layers and depth of characters. Plus, I changed a bit of the storyline in regards to the people in Angie’s life and how they are affected by her disease. Her relationship with everyone she knows, including her parents, changes dramatically as she struggles to survive in her new world.
VEDA: Do you think your book speaks to people who are experiencing similar symptoms, or are you looking to reach out to a new audience of people who have never heard of a vestibular disorder?
AW: Both. The book just recently launched and people started gobbling up eBook versions of Dizzy right away. I have to admit, the book is a fast read and actually very funny in parts, but instantly I started receiving the most incredible emails from people all over the world thanking me for writing their story. From Los Angeles, to London to Rio de Janeiro. No, they weren’t Broadway stars, but what happens to Angie, all of us with vestibular disorders can relate to.
And yes, on the other end, I wanted to tell the world about this silent disease. Educate them and hopefully they’ll be more compassionate when they see one of us possibly “wobbling” down the street. I’m thrilled that I have an opportunity, a platform, to reach out to people all over the world who are diagnosed with balance disorders and remind them that they are not alone.
VEDA: When you first started experiencing symptoms of your vestibular disorder, what was your reaction?
AW: Panic. Fear. My first symptom appeared in my left ear. People’s voices I knew sounded off, like they were in a different octave. Some sounded deeper, some higher. I knew enough that you don’t wait to see what happens to an ear problem so I ran to an ENT specialist that day. By the time I got to their office, I had lost my sense of taste and smell. They were baffled. I was put on a short-term dose of prednisone and my symptoms went away. But the day I stopped the drug, everything came back, but worse. Then the oscillopsia set in. Then my panic and fear turned to terror.
VEDA: How long did it take you to receive an accurate diagnosis for your condition? How many doctors did you visit?
AW: About seven weeks and 8 doctors. In hindsight, I don’t understand whey they couldn’t figure it out sooner. And I live in New York City. There are some of the most respected and talented physicians and hospitals in this town. I think what was confusing them was the loss of smell and taste along with the vestibular symptoms and oscillopsia. They were hunting for a brain tumor. And for a while, they thought it was multiple sclerosis. By the time they diagnosed my problem correctly, they took a spinal tap to see if that could give a clue as to what caused all this. But the fluid was clear. Their hypothetical conclusion: I had a virus that went to my brain and after it had done all its damage, it dissipated. I never felt sick. I never felt any pain in my head prior to the vestibular symptoms. But once the disease set it, I thought my head was going to explode. I thought I had water on the brain and the only way to get relief was to lie on my back, on my bed, with my head hanging over the edge. Then tinnitus set in. Roaring tinnitus, which I still have. I had to go on full dose prednisone for over a year to bring back my sense of taste and smell and relieve the pressure in my skull.
VEDA: What kinds of therapy did you go through to help you compensate for your vestibular symptoms?
AW: I worked with a brilliant physical therapist from the Rusk Institute. I would walk and slowly look to the left and then to the right, hopefully not falling over. Then I’d do the same but looking up at an angle, then down at an angle. We did Romberg exercises for vestibular as well as working with the letter “B”. Taped up onto a wall, I would focus on the letter and move my head side to side and up and down teaching my brain and eyes to track smoothly again. My oscillopsia doctor had me do similar exercises with my eyes following my fist as I passed it back and forth in front of me. First, in front of a blank wall, then on a busy pattern, then while walking in step. In complete darkness, I fall to the floor. My brain doesn’t know if I’m upright or upside down. I think it drops me, for protection. It has no clue as to where we are.
VEDA: Do you still need therapy, or are you “cured”?
AW: No, I’m not cured. The oscillopsia is milder but my vestibular symptoms are as bad as they were in the very beginning. I have what I call “lighter” days. But that can change in an instant. Normally, with the tilt of my head, I do a flip completely around, in that direction, internally. If I lean forward I do an internal summersault in that direction. If I lean back, I flip backwards. And like I said, walking is like bouncing on a pogo stick. It’s quite exhausting so I have to pace myself. And my body stiffens up, trying to keep my head as still as possible. It’s a good thing I know some great shiatsu practitioners! When it is a bad day, I will go back to my vestibular exercises but I no longer work with my physical therapist. As he said, “Life is now your therapy.” I do have check ups with my vestibular and oscillopsia doctors several times a year.
VEDA: Were your family, friends and coworkers supportive of your recovery?
AW: My family and friends have been terrific. I was actually frightened to tell my publisher and editor in the beginning as well as the film producers. It’s not that I felt they would think I was lying, I feared they would think I couldn’t do my job as a writer. I feared that too. Especially on a film set – that can be an exhausting experience. I no longer do the amount of book signings I used to. The bright lights, the sounds, the cross-patterning of images, the excitement, the fear – all make my symptoms worse. I’m kind of lucky that many of us writers now do most of our promotional work on the Internet instead of in “brick and mortar” stores.
VEDA: If you could say one thing to someone who has just discovered that they have a vestibular disorder, what would that be?
AW: Breathe. Take it one step at a time, literally. Try to stay active, it’s part of your therapy. Talk to your friends or family and tell them how you’re feeling. Or reach out to support groups like VEDA. Join chat forums and share your experiences. And allow yourself the luxury of having a meltdown whenever you need to. For me, it always seems to happen in a public place...and the tears start to flow. But let them wash over and through you. The ancient Chinese believe that tears turned inward are the source of all disease. So I say, a cry a day keeps the doctor away.
You can purchase Arthur Wooten’s Book, “Dizzy: A Fictional Memoir” on Amazon.com.