Belly Dancing After Brain Surgery, One Woman's Journey
As 25-year-old Lady Lysette stepped up to the stage, her head was encased in a beautiful blue scarf that hid her scar, the only physical remnant of her 3 cm AVM, a massive tangle of blood vessels in her right occipital lobe. The MC who announced her, though mentioning her performance came only six months after brain surgery, made an unrelated joke that the audience responded to in laughter.
It wasn't exactly the best environment for Lysette, a belly dancer and Palm Harbor, Florida resident, to move into a highly emotional piece, expressing the ups and downs of living through and after brain surgery. The song she danced to was a version of "I Want To Hold Your Hand" by The Beatles. To Lysette, the song represented all the comfort she needed during her trials, a comfort given to her by her fiance and family, and noticeably absent from the belly dance community of which she thought she was a part.
"That hand keeps you tethered to the world and shows you that there IS someone there. And that they love you," said Lysette.
In June 2010 when she was diagnosed, Lysette was 25 years old. As she waited for the results to come back, she pestered the X-Ray technician with questions, hoping to get a hint of what was to come. The news her doctor gave her was staggering.
Since that horrifying day, she has endured two back-to-back brain procedures, and lives in chronic pain. Now 27, in November it will be two years since she went under the knife, and only recently she has learned that the doctors have exhausted all options to diagnose and cure her pain. There is now a very real chance Lysette will have to go back into the hospital for what may begin another series of surgeries to bring her back to normal.
"Obstacle is a word that I hear and experience almost every day. I have had the odds stacked against me since day one," said Lysette.
Quite literally, she is correct. The AVM, or Arterial Venous Malformation, her doctor discovered on a hunch, is a mass of blood vessels that forms in utero. In effect, she has had it all her life. For most, AVM's go undetected, unless they burst, causing major complications such as stroke, aneurysm or death. As her doctor said, they are ticking time bombs as they grow every year, as does the risk of rupture.
To find and diagnose an AVM is rare, especially at her young age; her doctor sent Lysette to receive an MRI on a hunch believing some mental and emotional problems may reside in her brain. Though that hunch turned out not to be true, he did discover her 3 cm AVM.
"I was lucky mine was found," Lysette said. "AVMs work like a vortex and actually sorta suck blood away from the brain, so my 25 years of life, I did not have proper blood flow to my brain. Which is weird to think about, but weirder still to experience."
Treatment involved embolizing the blood vessels, a non-surgical, minimally-invasive procedure used to slow or stop blood supply. Lysette’s lasted three hours. The next step is a craniotomy. This is the more invasive surgery where the AVM is actually removed. 25 staples and seven hours later, Lysette was AVM free.
Because her condition and age made her a rare case, Lysette was asked if she could be used as a teaching experience for the USF Hospital. Knowing how it would help others, Lysette consented.
"AVMs occur in 1% of the population. So it is rare, and having a healthy 25 year old with one that was un-ruptured was a good learning tool," said Lysette.
Though she had the full support of her family and then-boyfriend, now-fiance, there was one community that Lysette felt unexpectedly distant from - the belly dance community.
Belly dance and Lysette have had a relatively long history. She found the belly dance community when she was 15, living in Virginia, and struggling to come to terms with her body. More than other teenagers dealing with the stress of school and hormones, medications Lysette was using to treat her mental health resulted in weight gain. Looking to express her naturally creative side while accepting her shape, Lysette discovered belly dance.
"I have always LOVED Dance, but when I was in the Jazz and Ballet Classes, I never felt like I fit in," Lysette said. "I didn't start belly dance to LOSE the weight, I sought out a dance form that accepted me for ME."
Lysette moved from student, to troupe member, and upon moving to Florida, from performer to teacher. Though her body at times would cramp and cause agonizing pain, Lysette was determined to pursue belly dance. She sought an environment where she could teach and share what she was learning and found it at Temple Goddess Dance and Yoga.
She loved the community she had found, especially at Temple Goddess where owners Eve and Greg provided real critique, not just criticism or empty praises, that helped Lysette grow as a performer.
"They know that I want to be a better dancer, that in order for there to be growth, there must be understanding that you have to LISTEN and really hear what your peers are saying. That critique and feedback are often another way for someone to tell you 'Hey I think what you are doing is amazing and I want to you grow and become better,'" said Lysette.
But as Lysette discovered her AVM, waited for surgery, and then fought to recover, she felt distant from many of her belly dance sisters. Knowing that if her AVM burst before surgery, she feared the loss of her vision, or worse, her life. She looked to her sisters for support but found few friends to comfort her.
"I had thought I had made friends in the community, and that I was a valued member, and I had heard AND seen many dancers face breast cancer, illness, many many things, and people rallied around them. But when I became ill and told everyone that I was going to have brain surgery, I was almost treated as if I had the plague,” Lysette said. "It was devastating."
Unlike other illnesses and treatments that cause physical ailments, most of what Lysette felt and experienced was internal. She understood that because people could not see her pain, they couldn't relate to it. Unfortunately, that didn't lessen her grief stemming from feeling betrayed by her community.
Regardless of feeling distant from other belly dances, she sought to express her journey through belly dance post-surgery. Her decision came in part from an Unmata DVD and interview with Amy Sigil. In the middle of dealing with everything that came from her surgery, Lysette purchased this DVD, put it into her DVD player, and danced through the entire two hours. After her workout, Lysette decided she was ready to come back to the stage.
Later, Lysette had a chance to meet Amy, and the words of wisdom she received are a continuing inspiration to Lysette.
"She told me 'You take away the excuses, you don't hide behind them or complain about them, you OWN them. You don't say "Oh this is too hard, I had brain surgery, I am in constant pain, I don't have any money" or whatever. You OWN your illness, you take away the excuses.' And that made me realise that even though I didn't have the support of the dance community I thought I would have going into something so frightening as Brain Surgery, that it didn't matter because I STILL got back up on stage, and after six months no less. I owned my shortcomings, I owned my issues, my pain, all of it. So I always try and remind myself of that when I feel down or hopeless," said Lysette.
Regardless of feeling betrayed or alone, Lysette continues to move forward in her journey with belly dance. In the same year as her brain surgery, Lysette performed on the stage six times. She continues to take hours of workshops and develop her skills.
"Sometimes I think that the only reason I am able, or have succeeded in getting through all this is just sheer stubbornness and hardheadedness, Just the unrelenting drive to never give up. To keep fighting because I know deep down in my heart there is a place for me. A place that will accept me for who I am, faults and all. That will see me for who I am as well as what I can do," Lysette said. "I know that if I let myself give up, then I will never be able to move forward. The people in my life, Family, Fiance, Dancers, the ones that I REALLY trust, I know that they are there for me and I for them, and I know they won't let me quit."
There were many unexpected side effects of Lysette's brain procedures, but one turned out for the positive. Before Lysette's surgery, her AVM was stopping more than just blood flow. Because of the location, her neuro pathways were blocked, prevening Lysette from fully experiencing emotions.
"I remember waking up form the craniotomy and looking at my family and feeling like I hadn't seen them in a LONG time," Lysette said. "I can now give ALL I have to the dance. Not just technical things, but true emotion, which is really at the heart of any dance."
Watch Lysette's comeback performance:
To someone who is fighting an illness or someone supporting a loved one through surgeries, here is advice from Lysette:
"Because one thing people don’t understand about MAJOR surgery and pain, is that there is no medication, no special words, no nothing that can make the pain stop or make things better a lot of the times. What helps you hold on..helps you really just keep on fighting, is the hand in your own, that of your parent or loved one, that squeezes back because it shows they are going through it with you."