Fits and Starts

I had a seizure in Prospect Park two weeks ago. And another in the ambulance on the way to hospital.

 

The medical community talks about ‘auras’: how people often sense a change in the air before they have a fit. I was feeling tired anyhow, and had forgotten to take my anti-seizure medication the night before. I’d doubled the dose in the morning to make it up. Then set off to walk across Prospect Park to have brunch with friends.

 

Still tired (but when am I not?), we started walking back, and it was when we hit the gorgeous boathouse that I began to feel those old teutonic plates shifting again.

 

And the words… a disconnect between what I wanted to say and the noises I uttered.

 

Ed was there and caught me, and our friends Steve and Ria sorted an ambulance. A passing doctor explained the importance of placing me on my side on the ground, ensuring I kept my airways clear.

 

I came to in the ambulance, outraged at the incompetence of the man trying to save my life.

 

Every two weeks I get Ivy League nurses at Columbia injecting me, so I know a good vein spotter when I see one. This guy hadn’t even completed first grade. But he was trying to save my life, so I could have been a little nicer. Ed said I was horrid. He also said I kept on trying to take my clothes off. Does unconsciousness expose innate and instinctive bad behavior? No need to answer.

 

Home that evening, lying in a hot bath, I could feel anxiety morphing into terror stealing along my veins. Why did I have these seizures? The cancer must have returned. The clock has shifted. The hourglass flipped. The smiley performed a 180-degree flip, TEF had hit a bracket key on my human keyboard of emotions.

 

My insurance policy of doom and despair kicked in, ahead of my MRI scheduled for the following week. Despite a CT scan done there and then, and which showed no evidence of recurrence, I knew with that dull certainty reserved for serious shit that the weeble (remember, I’m a 1970’s kids’ toy called a weeble, that famously ‘wobbles but doesn’t fall down’) was under threat. I had to manage my expectations, hence the insurance policy. If I assume the worse, anything better would be much better than better, sortathing.

 

This was all so different than the first time I had a seizure, back in January. This led to my diagnosis, delivered by the completely charming Dr Andrew Chi, head of neuro-oncology at NYU. It was a stunningly stark moment that I don’t expect to ever completely process. I do remember feeling shocked at the reality, but not completely surprised, nor even devastated. The previous weeks since my brain surgery had seen me stalking my surgeon via phone calls and emails, and he had taken his time to get back to me. When we finally spoke, he’d told me I had a glioma. I was sitting on our bed looking at the spot on the skirting board where Gerard didn’t paint sufficiently thoroughly, thinking: ‘there’s a false upbeat in the surgeon’s tone. He doesn’t want to tell me everything.’ So I’d mustered my thoughts and asked him if this meant I was a goner. The skirting board was banished as he uttered “Oh, you’re not going anywhere”. Yay! Onwards! “Where can I find out more about gliomas?” I ‘d asked. Ha! The naivety. “Don’t google. I’m referring you to Dr Chi, he’ll talk you through it.”

 

Google told me lots of horrible things. Curiously, the same horrid explanatory paragraph seemed to show up on every article associated with gliomas over many years. Plagiarism isn’t the sole preserve of one Melania Trump, it seems. So I could tell that it was bad news, but that I would need Chi to provide accuracy, detail and, hopefully, Hope.

 

Which he did. He gave me my diagnosis with very specific reasons to be cheerful. Size and location of tumor, good surgery and recovery, my age and overall health. Both in content and manner, the way he delivered my diagnosis was a model of excellence.

 

Straight afterwards, I nipped into the bathroom in NYU’s neuro-oncology unit. It’s surprisingly clean, with grouting between the tiles that seems only to have known bleach. It was in that room, looking into the mirror, that I was first able to process my diagnosis. And in that moment to know that I was fundamentally on my own, and that, equally fundamentally, up to the task ahead.

 

In our kitchen in Greenwich where I grew up, we had a huge white pin board where we displayed all sorts of pictures and photographs. Somewhere on there was a piece of wood with a quote from Churchill burnt into it: “Please understand there is no depression in this house, and we are not interested in the possibilities of defeat. They do not exist.”

 

This surfaced in my mind in the NYU bathroom. But nine months later in Prospect Park two weeks ago, I found it much harder to grab at. During the days following these seizures, TEF licked its lips as it invaded my every moment, both conscious and unconscious. Its tentacles wrapped themselves around all thoughts of work, of home, of family and friends.

 

I felt myself swaying in its power, its grip tightening with every nanosecond I tried to stop thinking about it. Like a mad, attention-seeking psychopath, ignoring it was not an option. My dietary discipline cracked. My exercise stalled. My concentration diminished. Tiredness and anxiety took over. I longed for my MRI to provide the clarity I needed, to triumph over the emotions and provide a clear way forward.

 

And then it was ten days later, and the day of my MRI.

 

8am in the bowels of Columbia on 168th St. Electronic headgear was off. Earrings removed. Wishbone necklace set aside.

 

I lay down on the gurney, the cushion place under my knees for comfort. I twiddled the foam earphones and relaxed as the headphones were placed over my head.

 

The instinctive claustrophobia I normally feel failed to make an appearance, so keen was I to know whether the seizures had led to recurrence or not. CT scans only go so far….

 

They handed me the panic button. Wasn’t Panic Room a good name for a movie? Why the same thoughts each time, I ask myself each time.

 

Then the mask goes over my head, and foam pads are inserted each side to inhibit movement. There’s a tiny mirror above me where I can see a bit of my forehead. Why? Note to self-moment: ask the technicians why that’s there. But it’s so trivial I never do. But I get a small sense of enjoyment with the familiarity of the question rearing its head.

 

Then I’m moved inside a donut. It’s not a coffin it’s not even like a coffin it’s designed to help me stay healthy yes it is it is is stay breathing be calm you had two home births for fuck’s sake.

 

Why is it so goddamn noisy, like a road works has invaded my head? Note to self each time, ask the techs. Note to self each time, don’t worry you know you’ll forget and you don’t need to know. Just behave and let them do their jobs. They want the best for me I’m so lucky.

 

Pause half way through. Inject me with contrast. Then pummel away again.

 

OK you’re done. They smile inscrutably as they help me off the gurney. What must it be like to know whether the person is doing well or not and yet not be able to say? What secrets that basement must hold.

 

And then….. Just a matter of less than half and hour and nine floors up the elevator, along the corridor and into the neuro-oncology department. Dr Iwamoto arrives and delivers the headline:

 

“It’s a good MRI and I’m really pleased with your progress”.

 

YES

 

X

Fits and Starts

I had a seizure in the Park two weeks ago. And another in the ambulance on the way to hospital.

 

The medical community talks about ‘auras’: how people often sense a change in the air before they have a fit. I was feeling tired anyhow, and had forgotten to take my anti-seizure medication the night before. I’d doubled the dose in the morning to make it up. Then set off to walk across Prospect Park to have brunch with friends.

 

Still tired (but when am I not?), we started walking back, and it was when we hit the gorgeous boathouse that I began to feel those old Teutonic plates shifting again.

 

And the words… a disconnect between what I wanted to say and the noises I uttered.

 

Ed was there and caught me, and our friends Steve and Ria sorted an ambulance. A passing doctor explained the importance of placing me on my side on the ground, ensuring I kept my airways clear.

 

I came to in the ambulance, outraged at the incompetence of the man trying to save my life.

 

Every two weeks I get Ivy League nurses at Columbia injecting me, so I know a good vein spotter when I see one. This guy hadn’t even completed first grade. But he was trying to save my life, so I could have been a little nicer. Ed said I was horrid. He also said I kept on trying to take my clothes off. Does sub consciousness expose innate and instinctive bad behavior? No need to answer.

 

Home that evening, lying in a hot bath, I could feel anxiety morphing into terror stealing along my veins. Why did I have these seizures? The cancer must have returned. The clock has shifted. The hourglass flipped. The smiley performed a 180-degree flip a bracket key.

 

My insurance policy of doom and despair kicked in, ahead of my MRI scheduled for the following week. Despite a CT scan done there and then, and which showed no evidence of recurrence, I knew with that dull certainty reserved for serious shit that the weeble was under threat. I had to manage my expectations.

 

When I was first given my diagnosis, delivered by the completely charming Dr Andrew Chi, head of neuro-oncology at NYU, I wasn’t completely surprised, nor even devastated. The previous weeks had seen me stalking my surgeon via phone calls and emails, and he had taken his time to get back to me. When we finally spoke, he’d told me I had a glioma. I was sitting on our bed looking at the spot on the skirting board where Gerard didn’t paint sufficiently thoroughly, thinking: ‘there’s a false upbeat in the surgeon’s tone. He doesn’t want to tell me everything.’ So I’d mustered my thoughts and asked him if this meant I was a goner. The skirting board was banished as he uttered “Oh, you’re not going anywhere”. “Where can I find out more about glioma’s?” I ‘d asked. Ha! The naivety. “Don’t google. I’m referring you to Dr Chi, he’ll talk you through it.”

 

Google told me lots of horrible things. Curiously, the same horrid paragraph seemed to show up on every article associated with gliomas over many years. Plagiarism isn’t the sole preserve of one Melania Trump, it seems. So I could tell that it was bad news, but that I would need Chi to provide accuracy, detail and…. Hope.

 

Which he did. He gave me my diagnosis with very specific reasons to be cheerful. Size and location of tumor, good surgery and recovery, my age and overall health. Both in content and manner. The way he delivered my diagnosis was a model of excellence.

 

The bathroom in NYU’s neuro-oncology unit is surprisingly clean, with grouting between the tiles that seems only to have known bleach. It was in that room, looking into the mirror, that I was first able to process my diagnosis. And in that moment know that I was fundamentally on my own, and that, equally fundamentally, up to the task ahead.

 

In our kitchen in Greenwich where I grew up, we had a huge white pin board where we displayed all sorts of pictures and photographs. Somewhere on there was a piece of wood with a quote from Churchill burnt into it: “Please understand there is no depression in this house, and we are not interested in the possibilities of defeat. They do not exist.”

 

This surfaced in my mind in the NYU bathroom. But I found it much harder to grab at it in the Park. During the following week, TEF licked its lips as it invaded my every moment, both conscious and unconscious. Its tentacles wrapped themselves around all thoughts of work, of home, of family and friends.

 

I felt myself swaying in its power, its grip tightening with every nanosecond I tried to stop thinking about it. Like a mad, attention-seeking psychopath, ignoring it was not an option.

 

Then it was ten days later, 7am in the bowels of Columbia on 168th St. Electronic headgear was off. Earrings removed. Wishbone necklace set aside.

 

I lay down on the gurney, the cushion place under my knees for comfort. I twiddled the foam earphones and relaxed as the headphones were placed over my head.

 

The instinctive claustrophobia I normally feel failed to make an appearance, so keen was I to know whether the seizures had led to recurrence or not. CT scans only go so far….

 

They handed me the panic button. Wasn’t Panic Room a good name for a movie? Why the same thoughts each time.

 

Then the mask goes over my head, and foam pads are inserted each side of my head to inhibit movement. There’s a tiny mirror above me where I can see a bit of my forehead. Why? Note to self-moment: ask the technicians why that’s there. But it’s so trivial I never do. But I get a small sense of enjoyment with the familiarity of the question rearing its head.

 

Then I’m moved inside a donut. It’s not a coffin it’s not even like a coffin it’s designed to help me stay healthy yes it is it is is stay breathing be calm you had two home births for fuck’s sake.

 

Why is it so goddamn noisy, like a road works has invaded my head? Note to self each time, ask the techs. Note to self each time, don’t worry you know you’ll forget and you don’t need to know. Just behave and let them do their jobs. They want the best for me I’m so lucky.

 

Pause half way through. Inject me with contrast. Then pummel away again.

 

OK you’re done. They smile inscrutably. What must it be like to know whether the person is doing well or not and yet not be able to say? What secrets that basement must hold.

 

And then….. Just a matter of less than half and hour and nine floors up the elevator, along the corridor and into the neuro-oncology department. Dr Iwamoto arrives and delivers the headline:

 

“It’s a good MRI and I’m really pleased with your progress”.

 

YES

 

X