That Girl Can Fly
I have brain damage, but I wasn’t born that way. When I tell people I had brain surgery, they never respond. Their faces just go blank. One time when I stepped up to the counter and watched the cashier ring up my groceries, she asked me how I was. Just to see what kind of a response I’d get, I told her I had brain surgery. She looked at me for a moment and then continues scanning my groceries. I just stood there.
Nobody has time for a good story anymore.
I returned home after living in Egypt for two years. It wasn’t my first trip, though I was a Belly Dancer residing in the SF Bay Area. I was unique. One of the few Black Belly Dancers in a community of and instructor. Dancer and instructor and felt a need for an “authentic” immersive experience to experience the music, food, and culture of Egyptians. I figured if I was going to be a Belly Dancer, I better go and experience it firsthand. I wanted the real deal trip, not the one that most tourists take.
I ended up staying in a small village on the Nile, across from Queen Hatshepsut’s temple. The man I rented the little flat from had a wife and seven sons. It was a fantastic time hanging out with this family, baking bread with the wife of the man who rented the room. She had seven sons, one with special needs who used to sit with us on the roof, holding with henna in his closed fists.
On the first trip, I returned with a mishmash of the typical cheap touristy stuff you pick up in the Cairo marketplaces where persistent merchants track and cajole you into buying this and that. It’s noisy, dusty, and smells like camel dung. There’s the constant bartering and smiling faces who gotta’ have that sale. A was a good deal for me with American dollars to spend that could feel like an Egyptian family for a week.
A set of mini alabaster pyramids, a picture of Queen Hatshepsut painted on parchment, coin belts, and a silver necklace with the eye of Horus dangling from it. Twenty years later, I still have that gorgeous hand-beaded white belly dance costume with matching gloves packed away in my closet. It was tailor-made just for me and weighed easily 5 pounds.
On my second trip, I came back to the U.S. with a new husband. A tall sexy Black Arab man from Sudan who spoke pretty good English and loved me to death. It was the happiest I’d been in a long time. Twenty years later, we’re still going strong.
It didn’t take us long to find our new apartment and jobs. He was a tech, so his skills were in demand. I had a long history as a journalist and activist, and it wasn’t long before I got my Belly Dance studio set up and going and got back to performing and teaching again.
Things were looking up. My husband was settling into his new life in America, and we were happy in love, that is until my feet got tangled up in some stray computer wires on the office floor. I went flying through the air, landing headfirst onto a protruding steel file cabinet handle. Blam! In that instant, my entire universe changed. Somebody, please call 911!
I ended up with epilepsy as a result of the injury. Ten years of uncontrolled seizures, a lengthy legal battle, and one medication after another, none of which worked. With invasive monitoring, the doctors drill holes in your skull and place electrodes on your brain.
My brain injury is small compared to the horror of the attack on the United States. But, now, my country doesn’t even know it suffers from silent seizures. Seizures don’t always mean falling to the ground. I’d wake up in my bed with no recollection of how I got there.
Seizures leave you confused, exhausted, embarrassed, and emotionally spent. Sometimes it can take days to recover. Panic attacks and depression are typical. I lost my independence. I could no longer drive. Dr. Chung, an epileptologist, said I had “medically intractable seizures,” which means medication didn’t control them. At one point, I was on so many drugs I couldn’t feel my feet. I felt like I was floating in space or walking through walls. I had hallucinations.
Can you say “Amygdalohippocampectomy”?
My final option was surgery to remove the hippocampus from my right temporal lobe and a portion of my amygdala. Both are part of the limbic system. It’s where your emotions live.
A short lesson. The hippocampus sends memories to the appropriate part of the brain for long-term storage and retrieves them when necessary. The amygdala: is where the “Fight or Flight,” emotional responses, and memory live.
Well, That Sucks.
You’re sticking this where?
My seizures came from within the Right Temporal Lobe. Before the actual surgery, to get a closer look, screws were drilled into my skull, and wires were attached to my brain to see if I was the right candidate. The outcome is uncertain, the neurosurgeon said.
Really??
I wanted to see those wires them before they put them in and asked, “How are you going to patch up the holes after you take those screws out.” The neurosurgeon was actually funny. “We hold onto them and stick them back on.”
Okey Dokey, you can proceed. Candidates for epilepsy surgery undergo an extensive, expensive, and exhaustive pre-surgery evaluation. I say candidate because up until they open up your skull and take a look, they aren’t sure they’ll be able to do it.
Electroencephalography (EEG)
Magnetic Resonance Imaging (MRI)
Magnetic Resonance Spectroscopy (MRS)
Positron Emission Tomography (PET) —
Single Photon Emission Computed Tomography (SPECT)
EEG-video monitoring
Epilepsy Monitoring Unit
I had to pass many tests to verify that I was a candidate for brain surgery. During one test, one side of my brain was put to sleep while a Neuropsychiatrist spoke to the other. “What’s your favorite color?” “Purple,” I answered.
I spent days in two different Epilepsy Monitoring Units. The Neurologist wants to see where the seizures are coming from in your brain. They try all types of things to cause seizures so they can observe and record them happen. Sleep deprivation, different foods, noises, TV, flashing lights, etc. You get Neuropsychological testing and psychiatric evaluations before and after the surgery.
Wada Test is where each hemisphere is alternately injected with a medication to “put it to sleep.” They run a needle through a vein that goes up through your groin. While one side of your brain is awake, they test the other for others and are tested for memory, speech, and the ability to understand speech. That’s when they ask a series of questions. This slideshow will give you a better idea of the process. Come back when you finish reading.
https://health.ucsd.edu/specialties/neuro/specialty-programs/epilepsy-center/surgery-for-epilepsy/Pages/wada-test.aspx
Styin’ Borg Implants.
What else would they use?
The Enhanced Brain
I was handcuffed to the bed at one point so that I couldn’t snatch the bandages off after surgery. My husband was with me the entire time. That man deserves a gold, silver, and bronze medal. He was horrified when he saw me in the Intensive Care Unit after the surgery. “Is she gonna’ stay like that?” he asked the Doctor. “No, no. That’s just from the swelling.”
I’ve often asked why he didn’t take pictures. He answered, “No, Asata, you wouldn’t have wanted to see that.” “Why,” I asked. “You looked like an alien. Your head was all smashed and crooked”, he said with a traumatized look on his face. I felt for him. Though actually, I would have liked to see those pictures.
Passion and Tears
Healing from Brain Surgery is a slow process. Some of the damage to the brain due to seizures is irreversible. My operation was deemed a success. Later I was tested to see if there were any noticeable changes in my brain. My Neurologist humorously told me, “Your IQ scores went up.” Wow! Imagine that chunks of my brain are gone, I’m paranoid, have felt suicidal a few times (typical for people with Brain damage), and the dread that seizures will return is always there.
I ran out of the gym in tears and freaked one day when free weights came too close to my head. At full-speed mode, I was out of there. Fight or Flight baby. I have my independence back and can drive again. Was it worth it? Hell yea. Could I have gone through this without my husband? No way. Without my family? Nope. Without supportive friends? Absolutely not. Will you completely recover? I don’t think so. It’s a part of my story. The new and reconfigured me.
The damage leaves you feeling lost, irritated, violent, and often depressed. Special memories are gone forever. I do remember the day I sat and watched old Star Treks, and it felt like the first time. I recall saying, “Hey. They held that episode back.” I’ve alienated some friends and family. Some are forever lost.
Some things aren’t worth remembering. True. I feel more vulnerable and emotional. I say what’s on my mind even more than before. I am truthful even in times when it isn’t such a good idea. Empathy pours out and leaves me emotionally drained. I cry at the drop of a hat. I have to text when it is too hard to talk during some conversations. But it’s OK. At least I’m smarter now.
Can Our Country Heal?
911 Memorial
My injury was life-altering for me, for my family and my friends. Likewise, what happened on 9/11 altered an entire country. I have a question, though. Has our traumatically brain-damaged country become smarter? Can we move through the world, not scared to death of another terrorist attack? Perhaps. We’ve turned into a mean, frightened, and closed country. We are frightening to the rest of the world. We are scared of each other.
Somebody really should call 911!
It’s a war between the right and the left hemisphere. We don’t trust each other. We are in constant “Fight or Flight.” Foreign entities can manipulate us as they couldn’t before. Not only were both of the country’s hippocampus cut out but, the amygdala as well. We are an emotional mess. Emergency response teams can’t fix that.
You’d only know I had brain surgery if I told you. When I do people, they look at me strangely but never ask me why. The saying, “It’s not brain surgery,” resonates differently now. Maybe people don’t know how to respond or want to ignore it.
I would get upset when people I thought would understand what I’ve gone through and that I’m different now. They didn’t mean it positively, either. “Yep, sure am. I’ve got a hidden scar behind my right ear, and I rub it sometimes as a reminder. It’s the mark of a warrior.
Just as it has taken me time to accept, I am not the same person our country will have to admit the same thing. We are not the same. We are damaged but, I hope not beyond repair.