A Dad Tried To Bully Me Into Giving My Seat To His Kid. Here's What Happened When I Said No.
The accommodation turned out to be a metal bench attached to the back of a barricade that separated the VIP section from the general admission area. When I was seated, I faced away from the stage, into the VIP section. My head was in line with the standing crowd's elbows. I was four months into recovering and terrified I would get hit on my healing skull.
As everyone sang along to teen pop star JVKE, the VIP crowd became denser. It was harder for me to stand up and turn around to watch the concert. But, if I didn't try to stand up, I'd miss the concert and the joy on my daughter's face.
It was during one of those moments when I stood that a man told his child to stand on my seat.
The man and his family were part of the VIPs. I saw them when they were led into the section by people wearing all black clothing and headsets. The man was about 6 feet tall, wore a tight white T-shirt that accentuated his muscular build and sported a curly-hair-topped mohawk.
I was afraid to confront him, but I needed my seat.
'Sorry, he can't stand there.' I said. 'That's my seat.'
The man stared me down.
'Oh yeah? That's your seat?' He reeked of beer and a jagged vein bulged from his left temple. 'Why are you so special?'
His question triggered an internal response in me that I had been working hard to erase — cowering instead of advocating. It was a residual trauma from more than a decade of not being taken seriously by doctors.
Starting in my early 20s, I experienced unexplained dizzy spells, often felt fatigued and had crippling anxiety that prevented me from falling asleep, staying asleep or sleeping at all. One day, three years before I had my stroke, my brain felt so foggy that all I could do was curl up on my couch in the fetal position and cry for hours. I was so frustrated. I couldn't find the words to explain to my husband and daughters what was wrong. All I could do was sob.
I bounced around from doctor to doctor for years, and each one blamed my malaise on something different: stress, an autoimmune disorder, being overweight.
Not one said, 'We should order an MRI of your brain.'
At 37 years old, I still had no answers, except for a therapist's diagnosis of medical-related post-traumatic stress disorder.
Then, the stroke snuck up on me. On Tuesday, I felt a pain in my shoulder. On Wednesday, I couldn't grip my phone and my legs felt wobbly. On Thursday, I noticed that my left hand was slow to type, and I felt a sharp pain radiating up my wrist. Friday morning, I struggled to brush my teeth. That's when I, begrudgingly, went to the emergency room. I expected to be given an overpriced Tylenol and orders to avoid heavy lifting and rest.
When the tests came back, the ER doctor began to tell me the results in Spanish, my native language.
Un derrame cerebral.
I translated it into literal English: My brain was spilling?
That doesn't make sense. Do I suddenly not understand Spanish? I wondered.
'Can you say that again, in English, please?' I said.
He said my brain was spilling, and probably had been bleeding for years. Then he told me to prepare for brain surgery.
Two days later, a neurosurgeon, whom I'd met only twice, shaved a 6-inch strip across my head, drilled a hole in my skull and excised a cerebral cavernous malformation from my right frontal lobe. He put my head back together with a snowflake-shaped metal plate, screws and 28 staples.
Then I had to spend months relearning how to use my body and my brain. I struggled to walk, read, hold a fork and tie my shoes. Loud noises made my heart rate shoot up, which needed to stay below 110 bpm or there was a risk of increasing blood pressure in my swollen brain. To avoid jarring noises, my husband unplugged the hospital room telephone, told every visitor to whisper and asked the nurses to stay away unless their presence was medically necessary.
As much as I struggled, I never felt like I had the right to use the word 'disabled.' If I was truly disabled, I thought, my doctor would have surely slid a packet of papers across my hospital tray table and said, 'Welcome to the Disability Club.' He'd punctuate his statement with a reassuring pat on my hand. Then, I'd diligently study the bylaws of this group I'd unwillingly joined.
But that is not what happened.
It turns out that when you suddenly become disabled, there is no committee to ask if you qualify to label yourself as such or to ask what accommodations might be available. You have to learn to advocate for yourself.
Advocating can be confusing and hard when your disability is invisible. Mine also runs on a spectrum and can be situational. It becomes much harder to manage the effects of having a hole in my brain if I don't sleep well, schedule breaks or avoid overstimulation. Participating in a noisy gathering means I'm tired, slow and useless for a day or two afterward. These nuances make it frustrating when people — sometimes even family members — don't believe that my needs are real. People with disabilities, invisible or not, shouldn't have to explain themselves. Nor should accommodations for them be met at the lowest bar.
As much as I hated confrontation, I had already missed out on too much thanks to my illness, and so had my family. I couldn't let this man at the concert bully me into giving up my seat too.
'I had brain surgery.'
Jerk. That's why I'm special.
When my husband saw the confrontation, he put himself between me and the man and explained my situation. The man backed down, but he was only a few feet away for the rest of the night. His glare made me feel like he was judging whether my behavior aligned with his idea of disability.
Was I allowed to dance or smile?
Should I just sit there miserably with my back toward the stage to prove that I deserved my seat?
He didn't know that I had only recently started showering and getting dressed without help. He didn't notice that I was walking with a cane that night. He didn't see that I was wearing earplugs to mitigate the noise and that the next day, I'd be in bed all day staving off what I now refer to as the 'hangover' — a feeling that my brain no longer fits in my skull and is so heavy that it wants to burst out of my temples.
There is nothing I could have done to make that man understand that, even if it didn't look like it, most days I felt like my neurons were moving through quicksand — their messages to other parts of me went awry or were swallowed up entirely. I'd suddenly lose words, balance, the ability to organize my day and make the left side of my body do what I needed it to. He couldn't understand how difficult it is to lose your independence — and identity — from one day to the next, or how something as simple as having a place to sit was the difference between enjoying a concert with my family or having to stay home.
However, I don't worry about trying to make people understand anymore. I've realized that my right to advocate for myself isn't contingent on another person's sympathy. I've made peace with the things I can no longer do as well as I used to. I ask for the things I need, like a low table at a restaurant when I am offered a high top. I carry my noise-canceling earplugs everywhere and pop them in as soon as any public space gets too noisy. I sleep in or take naps when my brain tells me it needs a break. I say no to things I don't want to do. I smile, I dance, and I focus on my gratitude for all the things I don't have to miss.
Cyntianna C. Ledesma Ortega earned her first byline at 11 years old in the The Miami Herald's YO (Youth Only) section — a features section by and for kids. She holds a B.S. in communication and an Ed.D. in adult education from Florida International University, allowing her to combine her passions for writing and education as a learning experience designer. She lives in Miami — and probably always will — with her husband and two teenage daughters. When they're not driving aimlessly just to sing loudly in the car, she's writing, reading and daydreaming. Follow her at @cyntiannawrites on Instagram.
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