Tags
Magical Realism: From Seizure to Surgery
This is the second part of a three-part series on what it’s like to have a brain tumor diagnosed, then surgically removed. To read the first entry, ‘What it’s like to have a grand mal seizure’, click here.
I left the hospital with an appointment to see a neurosurgeon and a large dose of medication to suppress the seizures. I did feel safer on the medication, but I could barely string a coherent thought together. Despite the fact I’d just discovered I was going to require brain surgery, I was more worried about the fact I suddenly had no interest in what had previously obsessed me – news, politics, wars, the lives of strangers. I was afraid my career as a journalist was over.
I wrote this fragment in my diary on November 4th, almost a week after the tumor was discovered:
“Is it that matters of politics and war don’t matter when your health is compromised, or is it that they don’t matter at all? Why aren’t you interested in all the things you’ve been following for months and months? Have you turned a corner permanently? Is this posting over, not for health reasons, but because it’s no longer your destiny?”
My husband David had to go to Cairo for a couple of days on a work trip he couldn’t postpone. My insurance had not yet confirmed it would pay for the surgery (it did in the end) so at this point we thought we may have to pay for the surgery ourselves. He was reluctant to go, but I assured him I’d be fine.
After two days spent grieving my increasingly addled mind, I decided to stop my meds for a day. I’d clear my system, then start again on a lower dose.
I didn’t understand how serious my condition was.That night, when I closed my eyes to go to sleep, the seizures started coming.
In the moments before a fit, some people get an aura – a period of altered reality that warns them they’re about to fit. Auras can come in many guises – some people describe a strong sense of de ja vu, others hear voices or smell something unpleasant.
These moments before a seizure can even feel transcendent. One of history’s most famous epileptics, Fyodor Dostoyevsky, described his auras as an experience of “such joy that no one else could have any notion of. I would feel the most complete harmony in myself and in the whole world and this feeling was so strong and sweet that for a few seconds of such bliss I would give ten or more years of my life, even my whole life perhaps.”
But as I closed my eyes to sleep that night, I felt none of Fyodor’s joy – only terror. Drifting into the space between wake and sleep, I felt my brain literally coming free of its stem, like a hot-air balloon being untethered before flight, as though my skull were the world, and my brain was floating up into the sky.
Snap out of it! I shook my head back to awake, and commanded my mind to reach for the rope, to re-tether my brain to its stem. I am my mind. I am in CONTROL of my own mind. A film fragment played over and over – one of the final scenes from The Wizard of Oz. The Wizard would float away in his hot-air balloon, wave goodbye to the crowds below, and Dorothy would be left behind, with no way to get home.
Over and over appeared the Wizard, then Dorothy’s anguished crying. Play, rewind, play, rewind. The balloon would leave – my brain would float – I’d shake awake – re-tether. The Wizard waved. Dorothy wept. Rewind. Play.
I sat up in bed and sobbed. Frustration and fear. It was the deep blue before sunrise. I had to sleep, but sleep meant surrender. CONTROL. I needed to be in control.
Goddamit! FUCK this! Fuck the whole thing and fuck the whole world. I gulped down my medication, pleading for swift mercy, begging this chemical to take back control of my brain. Be doped up, useless, who fucking cares. Just let me feel safe going to sleep, please just let me sleep.
Sometime later I must have passed out, exhausted. When I woke, it was late morning.
I lay in our bed that day, autumn sunlight dappling through the window. Is that vomit? Was that one of those phantom bad smells that comes before a seizure? Hold on to the rope. Keep your brain in position. Now the muscles in my right arm were limp. I couldn’t lift my arm. Did I lean on it the wrong way, or was this the beginning of a turn?
As I lay there, I wrote in my diary:
“My brain is an entity of its own behavior and accord; I have no power to control it. Only an artificial chemical can keep it in place, stop it from untethering with the Wizard.
But the chemical warden patrolling my head exacts her own price – she wants to exert herself, flex her muscle, jangle her cuffs. My moods, my instincts – they’re all under her control. She’s got my brain in her grip – until I stop feeding her. I stopped feeding her yesterday, feeling her so huge in my head, and the next morning she was tiny, barely holding the rope.”
Then, as I wrote, I started to seize. The fits came in waves. Each time a fit would pass I’d keep writing, as though by recording them, I’d be able to regain control:
“I’m sitting up in bed and the tumor has me. I’m staring at the doona, neither totally awake nor asleep, and my eyes start moving again. Up to the right and diagonal, up, up, up, up – NO! NO! NO – NO. I am not having another fit. No. My mind is my own. No. Stop it. Stare at the bed. You can control this. You can stop it.
My head obeys, stops tilting. I’m staring at the bed, but my eyes are ticking over to the side of the room, like a reptile, seeing only the point I’m staring at and then suddenly a point several metres away.
It’s a warning. You can control the seizure this time, but your mind is not your own. You need the warden, and you’ll just have to put up with her until you can kick her out for good.”
Soon after this David came back from Cairo, several days earlier than planned, and we were able to control the seizures together – when I felt one coming, I’d tell him and he’d just hold my hand and talk me down.
But the days dragged. I tried to work, to read, but I could barely even focus my eyes. I couldn’t sleep the days away because dozing was terrifying. I wanted somebody to just put me into a coma, and wake me up when the tumor was gone.
To anyone who asked I would say I was so lucky it wasn’t cancer, and so grateful to have had the seizure. But I didn’t feel lucky – I felt empty. Even with constant support from David and, from afar, my parents, I felt myself becoming more unrecognisable by the day. My work – my sense of empowerment – felt a million miles away. Apart from loving my husband, I couldn’t imagine what it would feel like to have any kind of purpose again.
Like a husk, hollow. Invisible.
Postscript: One night the following week I spent several hours in an emergency ward with stabbing stomach pains. Doctors thought it might be a burst appendix, but it turned out to be a reaction to the medication. A different course of meds helped control the seizures and my moods, until I had the tumor removed on November 17th.
Tremendous writing, Jess. Nothing messes with your sense of free will like brain-related meds. I was briefly on anti-epileptics for my bipolar (they also brought on horrible stomach pains, so they switched me to something else) and had a similar experience.
Interesting – anti-seizure meds for bi-polar? Were you having fits Soph, or was there another active ingredient in the meds that is supposed to help bi-polar?
Valproic acid (also known as Depakote) is used as both an anti seizure medication and for treatment of Bipolar disorder. My son (9) is on is on a combination of that and Tryleptal to control his nearly constant (every several minutes) seizures.
Thank you for your descriptions of what your seizures were like. My son is limited verbally, so I read a lot of other people’s experiences to try to understand his.
Hi Erin, I’m so glad it helped in some way, and I really hope medication (and perhaps time, as he grows older) sees your son find more peace.
jessradio, your writing is wonderful but I know the seizures aren’t. Please keep posting.
Laurie from Miami, Florida usa
Thank you for sharing your journey with us.
Jess,
By pure coincidence, I was going to tweet part 1 with the gang that tweets on #BrainTumorThursday…. and I come here and see this. (which I tweeted…..)
Compelling and scary. I don’t think I would have stayed by myself. I’m a chicken. I would have been petrified to be alone.
So glad we “met” …. Stay well and stay in touch, too…
AnneMarie
xoxox
Hi Jess,
Just found your blog via #BrainTumorThursday…. In 2007 I had surgery to remove an Astrocytoma. Before that I dealt with 3 years of being on antiseizure meds which after a while didn’t work. Luckily I found an amazing surgeon in Boston after Drs in NY said that it couldn’t be done with surgery…
What you wrote about your experience with being on meds, auras and having seizures is amazingly close to my experience. It is terrifying–that feeling of being disconnected and out of control. I’m cancer free now but still have to take a great deal of meds to be seizure free. Sometimes I’ll have a slight breakthrough or aura but my docs think it might be PTSD. go figure…. Nevertheless I’m lucky to be here!
I admire your courage to be able to document your experience. I might do the same when I’m ready to really go back there. Even though its over, the memory is always there and its nice to feel a less alone.
I just followed you on Twitter… MarinasAngel
Have a great weekend!
Best,
Maria
Maria!!!
I tweeted the blog using #BrainTumorThursday. I try to help my friend @uvmer when I can. Proof that twitter does reach an audience! Wow…. Blown away here.
Jess…. Hope you are well…
AnneMarie
Thanks so much for posting AnneMarie, and for keeping the brain tumor community informed.
Wow Maria, so glad you found somebody who could remove the tumor. It’s fascinating to watch ourselves struggle with being taken over by something seemingly alien… I’ve found that writing it all down, and eventually publishing those accounts, has helped me feel like I have some semblance of control again. But yes, writing about it was painful, and I’ve spent many writing sessions weeping the entire time. But at least it feels like those tears are working towards healing, rather than just falling into a bottomless bucket. Do you mind me asking what grade your tumor was? And will you have to stay on medication for many years to come, or is there an end date in sight?
I’m glad that you’re okay. It’s fascinating though the things that we have in our lives that allow us to judge who we are. We use all these things that are like mile markers on a road of self-understanding. It’s almost like self-perception and self identity isn’t based on an understanding of who we actually are, maybe it’s too big to understand, but we assess our identity based on its reflection in all the things we do; work, marriage, social lives, things we have or places we go. Like we don’t exist as an entity unless we see that entity reflected back at us.
Thanks so much for sharing your experiences.
Hi Jess,
Yeah, I was very lucky to find someone and it was a long hard road before that. A biopsy with two infections that I had to be hospitalized for… doctors in NYC who gave me a terrible prognosis and suggested that my only option would be to get full head radiation. I found a brain surgeon in Boston who used an FMRI and I had the surgery awake which was an incredible experience (I will document this in my blog because people should not be afraid of this if their doctors are considering that option).
I had between a grade 2-3 mixed oligo-astrocytoma. I didn’t need any post surgery PT or OT thanks to my brilliant surgeon. However, a year later my doctors thought they saw a small growth and I was put on a round of Temodar for six months.
I have to say that my only struggle at this point in my life is having to be on so many medications. My tumor was large and the seizures I had were very severe. I read that about 15% of patients have to remain on meds after surgergy. I’m guessing its because of the location of the tumor and whatever damage it caused.
Of course, I always have in the back of my mind the fear that it might return but there is so many new treatments to fight back. And I always have the hope that they’ll come out with better meds with less side effects.
Nevertheless, I’m blessed with my health and am able to keep up with yoga and running…
Well, you inspired me to start blogging: mariasangelina.wordpress.com. 🙂
Thanks for sharing your story and inspiring me to do the same.
Maria
Thank you for such a thoughtful reply, Maria, and I’m so glad this blog spurred you to start blogging! I hope to see some posts by you soon. That sounds like one heck of a time – having surgery awake must have been absolutely incredible. What an experience. I’m getting repeat MRIs done in the next fortnight or so because my neurologist is suspicious about a white mark near the removal site – he says it could either be scarring, or remnants of the tumor. This in spite of the fact my surgeon said he’d got it all out – apparently that isn’t necessarily the case. So I understand what you mean about all the continued uncertainty – I’m still having seizures, and having to mess around with new medications, because both Tegretol and Keppra have both had adverse side-effects. How big was your tumor? And how long do they think you’ll be on medication for? Wishing you all the best Maria – I’ve found it terrifying, exhilarating and deeply affecting, all at once. xx
Hi Jess,
I came down to see part three because I was talking to Connie Agius and you came up in the convo. I just want to say I really miss your in-depth reporting from the Middle East and as a fellow journalist, I want you to know you are in my top three when it came to people whose work I trust on the region.
Keeping my fingers crossed for you and I know you’ll be back at it. You have that spirit.
Jess, I have a fear of seizures. I feel just like you EVERY DAY when you felt were about to have seizures. I can’t sleep. I am afraid of dozing off. I am afraid every day of the feeling like my mind is falling through a trap. I can’t help it. Now I am afraid I will also doze off into that “wizard of ozz” feeling. I am also afraid I will stare off into something distant and not be able to get back. Afraid also that my mind will feel like it will float off. Is there anything you think I can do to keep it together?
You’ve been through such a scary experience glad you’ve come out the other side ok.
I just found this by googling my experience;seeing if there was an answer out there for me. The horrible overwhelming fear that takes over with the seizures;as if something demonic is coming for me. I too have commanded my brain to “hold on” – this isn’t real.Mine is m9re like “Alice in Wonderland” than “Oz” – I always hated both of those movies(now I know why). I had a stroke and lost the left side of both eyes;and so experience these feelings most anytime I am moving, or others are moving past me. I am constantly telling myself: “Hold on – Keep moving forward-just keep going”
Sadly;the seizures bring on crippling fear; and the Keppra? Unbearable anger and negativity. Outside is “terrifying in itself with fireworks going off continually in the left side of your eyes. God is good though. I remind him that he promises to complete the good work he starts in us – “He will be faithful to complete it” He gave you an AMAZING gift. How many times I have tried to verbalize to others just ONE of my seizure experiences;and here I have found someone who has written it for me without knowing. Now – you appear to have disappeared. Is this real? Or just another seizure hallucination that I have experienced. Hold tight to your husband;he is right there with you,lifting you up as you have done for others with your story. For me it is a 150 lb Newfoundland that I live with;it has just been she and I for years before the stroke (at age 48)and that other heartbeat in your life makes all the difference in the world.Wherever you are Jess;please know that your writing here made a difference, and you are being prayed for and I thank the Lord now for finding your page…
Be Well,
Michelle