Grand Mal

****last updated Saturday January 9th, 2010****

This page covers the events of Thursday, December 10th until Midnight on Friday the 11th.

Here is how it all started. First of all, a bit of background:
It was thursday the 10th of December, 2009. I had been procrastinating all week and finally I managed to get myself home from work early enough to hit the laundromat and wash my clothes. It was long overdue and I could not put it off any longer. I arrived home from work at about 6:30 pm, and sorted my dirty laundry, and sat down on the sofa to check my emails and do a little surfing. Lucy (my beagle) was on the sofa to my left and I was paying close attention to the clock on the wall, because doing laundry is very time-sensitive, I needed to start my wash before 8pm in order to get everything done and dried. The time was precisely 7pm (19:00). Along with reading my emails I also opened a letter I received in the post (snail mail), which was more bad news about my overdue taxes (the cause of countless stress and anxiety over the past year).
This is when my face went flush: (it was my aura). It felt as though I had a head rush and that there was too much nicotine in my blood stream. I was also very hungry, I hadn’t eaten anything since about 11am so it didn’t suprise me that I felt a bit dizzy. But then my tongue went numb. I could not swallow. I honestly thought that I was having an anxiety attack and actively tried to prevent myself from hyperventilating. I had to try to breath deeply though my nose as my tongue was blocking my throat.
I thought that if I could rub my throat with my left hand I could perhaps initiate a gag reflex and cause myself to swallow, hoping that this would clear my throat passage so I could get more air into my lungs. HOWEVER, when I tried to rub my throat with my left hand, it was impossible for me to control my arms. I was flailing about and convulsing, which did little to help against hyperventilating. I tried to speak (and scream!) but I could make little more than gagging blubbery sounds. The scariest part of all of this was that I was perfectly conscious and of clear mind as to what was happening, cognizant of my inability to access my own motor control cortex: watching myself have the seizure as though I was outside of my body (yet still in the first person). The last thing I remember was that in trying to get my hand to my throat I either put my hand in Lucy’s mouth (she’s my dog) OR she was licking my hand: at the very least I recall that my left hand was warm and wet. My laptop fell to the floor (praise be to solid state drives!!). The room went spinny.
>>>I must have blacked out at this point. <<< When I awoke the first thing I saw was the clock on the wall which read 8pm (20:00). I had been unconscious for an hour. My entire body was sore, especially my legs. Actually I was completely physically exhausted. And I had no idea what to do next. So I poured myself a glass of wine and stepped onto the balcony for a cigarette. Then I started Googling... "epileptic seizure" was my first query. About two minutes later I called a girlfriend (my favorite girl) who has lived in Munich longer than I, and asked her if she knew of a good doctor because I thought I should probably make an appointment. She asked me why and I started babbling about epileptic seizures and what had happened. She told me to stay put because she was on her way over to my place and would be there in 45 minutes (easy to see why she's my favorite girl!). After reading more online about tonic-clonic seizures I started getting more worried… poured myself a second glass of wine and retreated again to the balcony for a smoke. This time I ran into my neighbor who asked if I had a cigarette for her, so we smoked together. And I told her about what just happened. She told me that she works at a hospital and made a quick phone call to a colleague. When she got off the phone she made it imperative to me that I needed to dial 112 for emergency and be checked over at the hospital. I told her that a girlfriend was on her way here and that she would help me to make the phone call (admittedly I am very self-conscious about using the telephone in Germany, especially Bavaria.)
A few minutes later my friend arrived and she called for the emergency medical team, explaining in her perfect German what the problem was. Less than five minutes later there were blinking lights outside my window:
Johanniter Ambulance

The EMT’s came into my apartment and asked me questions about what had happened. They seemed surprised that I had not shit my pants. I on the other hand was rather pleased about that fact. They told me that I needed to go for a ride with them in the ambulance and that I would be held overnight at the hospital and asked me if I needed to make any last minute arrangements: “dont forget to bring your insurance card!”
My favorite girl said that she would come with me in the ambulance (see why she is so wonderful!), and I quickly knocked on my neighbors door and asked if they would walk and feed my dog Lucy until further notice, which they gladly agreed to. Then the EMT’s escorted me to the ambulance, and strapped me into a gurney and after a failed attempt, managed to get an IV (needle) stuck into my elbow and explained that if I had another seizure while we were en route they might need to sedate me. The ride seemed to take forever. But once we got to the hospital things went extremely quickly. I was quite relaxed, though it was a very cold evening (now about 10pm, maybe even earlier). It was extremely helpful to have a beautiful, fluently German-speaking girl holding my hand the whole time. A neurologist checked my reflexes, shined lights in my eyes, took vial after vial of blood samples and explained that I needed to have an MRI brain scan, and they plopped me down into a wheelchair and off I went. My lovely German friend said she would wait…

When I got to the radiology department they were all ready for me and told me to get undressed. I said “really??” : YES. me: “can I have a gown or something?” at which point they very kindly produced a set of orderly’s scrubs. I really liked this, as I am anyway pretty crazy about pyjamas… I honestly can’t recall if they injected me with Contrast, but i doubt it. My only recollection was that it wasn’t nearly as interesting (acoustically) as when I had been given an MRI to examine my spinal column in 2008 (auf Deutsch Kernspinntomographie– I love that word!). It went fast and they wheeled me up to the in-patient ward for neurology, explaining that ALTHOUGH I am merely a publicly insured patient, the ward for publicly insureds was full, and I would have to make due in the (somewhat more posh) ward for privately insured patients. My lady friend met me there and was impressed by my new attire. It was getting late now, so we said our goodbyes and she offered to alleviate some of my stress in regards to Lucy and my laundry situation, so she took my apartment key and stopped by my place on her way home (which was TOTALLY out of her way, btw) and picked up Lucy-Beagle and a bag full of dirty laundry which she intended to wash at her place and bring to me the following day. She promised to take care of Lucy until I was released, which was a big relief and a very noble gesture. After she said goodbye, the nurse gave me some bread with sandwich meats and a sedative. I was starving and gulped down the vesper very quickly, slid that pill down my gullet and was in dreamland almost immediately. In retrospect, I seem to vaguely recall being awakened every 3 hours (or so) by a tender blond nurse with big eyes who was responsible for ensuring that my blood pressure was taken regularly and that I hadn’t [[ insert scary verb here ]]. I was very glad to have been given a sedative, because there was another patient in the room with me (it was a two-patient room) and he was in serious pain: one of those all-night-groaner types of patients. Without the sedative I would have never been able to sleep.
Or maybe I was dreaming…

I was awakened at around 7:30am by a female doctor who needed more of my blood. She was *very* friendly, extremely gentle, and particularly easy on the eyes. After drawing blood she had me sign a pile of disclaimers, most notably of which allowed the hospital to test my blood for HIV, Hepatitis, and some other scary stuff. So naturally I asked her if I would be able to receive copies of the results of these tests. To which she responded that in general, although I am required to sign the disclaimers, they rarely ever perform said blood-tests. Strange. I have no idea if this is any different in the USA or not, but I found it a bit funny. Nonetheless, after drawing my blood she told me that she would be having her daily meeting with the head neurologist (she is also a neurologist, after all, I was in the neurology ward!), and that after her meeting she would be back to discuss the results of my MRI taken the night previous.
So now here I was, wide awake and at attention at 8am with a large German breakfast before me and a head full of confusion. At this point the only thing I knew for sure was that I am now an Epileptic, and I now reside in the Neurology ward of a public hospital in Munich: specifically on the floor reserved for privately insured patients (of which I am *not* one). whatever.

So after eating I whipped out my mobile phone (HANDY) and started sending text messages (SMS’s):
1) boss at work “hi. in hospital. won’t be in today. sorry. kc”
I didn’t expect to get a quick response on that one as on Fridays my Project manager works from his home office. But I was wrong, having overlooked the fact that his daughter is under 1 year old, so he’d probably been up longer than me… He called me back and I briefed him on my status and told him I’d call back once I had found out what is wrong with me. At this point I only knew that they were holding me as an in-patient until further notice.
Not long after this phone conversation, the attending doctor returned and sat down next to my bed. She spoke perfect English. And called me “Herr Clelland” even after I repeatedly asked her to refer to me as “Kent.”
She told me that I have a brain tumor.
“Its a BIG ONE” she said.
“It must come out IMMEDIATELY”, came next.
“Your operation is scheduled for Saturday” (that was TOMORROW!)
“You have another MRI in 30 minutes, after which you will meet the Neuro-surgeon who will be performing the biopsy. It will be an open biopsy.” Then she paused.
My response: “Is there anywhere I can go to have a cigarette? Like a smoking lounge or something?”
She: “Smoking lounge?! No. but you can smoke on the balcony along with the other doctors, it’s just beyond those doors (pointing).”
Me: “I’ll be right back”
She: “Do you have any family you need to contact?”
Me: “Yes, but they are in the USA and I don’t have enough cellular credit to contact them”
She: “You can use the phone in my office, it’s no problem.”
Me: “That’s very sweet of you, thanks.”
….
Then I went out to the balcony to have a smoke with some nurses, orderlies and doctors. I felt lucky to be wearing scrubs, it made me ‘almost’ fit in. When I returned to my room, I was greeted by an orderly who informed me that it was his job to securely wheel me back down to radiology for my next set of pictures. Again, another “easy” MRI without contrast, but rather more extensive than the ‘quicky’ of the night before. Directly afterward I was wheeled down to surgery to meet with the Neuro-Surgeon whose job it would be to open me up in less than 24 hours…

TALK ABOUT FEELING UNPREPARED FOR A MEETING!! < s h i t >

So there I am sitting in this wheelchair in my orderly scrubs with a hospital gown thrown on overtop (so I would be clearly seen as a patient and not mistaken as an orderly!) with this crazy-crooked IV (needle) poking out of my left elbow (that hurt like a bitch!) and trying to stay calm while meeting this old dude who was explaining to me that he would be cutting into my skull tomorrow morning for the open biopsy and that while he was in there, it would make sense for him to just go ahead and remove the tumor, as opposed to first waiting for the biopsy results and then opening me up again. He said it with a kind-of ‘you’re cool with that, aren’t you?’ inflection…

I mean, WTF?! How the hell is one supposed to respond to a statement like that!? 24 hours ago I was drinking coffee at my desk at work and thought that I was relatively healthy! And now I’m being given the impression that I may only have weeks, if not days or even hours to live, and that some German dude is going to open me up like a can of beer and scoop out some bad stuff from inside my head. I was even too shocked and panicked to respond to this doctor at all. I have a vague remembrance of me nodding as he kept telling me scary item after scary item. I don’t even remember how the meeting ended, but an orderly must have pushed me back up to the neurology ward, at which time (now early afternoon) I made my first attempt to telephone to my parents in the USA. However they must have both already been at work, and there was NO WAY IN HELL that I was going to leave a message on the answering machine that starts with “Hi mom! I’m in the hospital with a brain tumor, and will be having an open-brain surgery tomorrow morning…” NO WAY. So I hung up without leaving a message and asked the doctor if I could try again later once the clock had marched towards a later hour. She very graciously told me that I could even use her phone after she had left for the night and showed me how to dial an international number from the hospital and personally introduced me to the night-nurse, informing her that I have the Doctor’s official permission to use her office phone after she left for the day. She concluded by telling me that she would postpone my surgery to Monday, so that I would have time to at the very least inform my family of my situation (which I heard in my ears as “talk to your mother and father one last time”…) She also, in the form of a verbal postscript, informed me that Saturdays are her day off and that a different (male) neurologist would be on duty tomorrow.

At this point my adrenaline was pumping hard. My heart was racing. My emotions were racing. I was at a loss for what to do. So I did what came naturally: I ate lunch. The nurse had kept it warm for me and so I dug in and had my first warm lunch since I can remember. It was delicious. And came with an assortment of anti-seizure pills and pain-relief medication. After a cigarette I called my project manager and filled him in on the situation. He asked me if there was anything that I needed. My only response was “cellular credit.” Ten minutes later I received a text message on my mobile that my account had been credited with something like 45 Euros. I have such awesome colleagues!

So I started calling friends and letting them know.
Actually I think I only called two people which started a chain reaction, and soon my phone was ringing more often than it ever had… And those friends also started crediting my phone with money, in lieu of not being able to do anything else and knowing that being cut off from the internet was just as bad as (if not worse than) having a brain tumor. I have such awesome friends!
Just as the Doctor was leaving for the day (at about 8pm Bavarian time) I tried to call my folks back home again. This time my mom picked up on the second ring… The conversation started out pretty normal, but obviously took a dramatic turn for the worse when mom asked me “how are you doing?”
All in all she remained very calm. What the hell else *could* she do? Her only son was scheduled to have an open-brain surgery in 72 hours on the other side of the planet? I hope that if I am a parent someday I never get such a phone call… But my mom, the model of stoic parenting, comforted me on the phone and verified that she had my correct (and current) mobile phone number. And then told me that she had to make some calls and would call me back later on.
So I had another smoke before laying down in my bed-on-wheels-with-service-buttons-for-chocolate-and-vanilla-pudding-on-demand… (joke)

It wasn’t long before my father called from his mobile phone and wanted details. I recalled as much as I could within a reasonably short (eg: international mobile to mobile length) phone call. We were both very shaken up. Neither of us is nearly as stoic as my mother.

Shortly after lying down my favorite girl called to tell me that she was on her way to the hospital with clean clothes, my toothbrush, my book, and my mobile phone charger. I have totally amazing friends!

I waited until she arrived to tell her all the news, fortunately it wasn’t more than an hour or so until she got there. It was emotional for both of us, though we were both very happy that my surgery was postponed until Monday. I am pretty sure we were both very relieved to have somebody to hug. We were all shook up… Shortly after, my mobile phone rang with a caller ID from the USA (001) and it was my sister (the doctor). She is still a young mother and hasn’t achieved nearly the stoicism our mother possesses, so there was a bit more panic in her voice, and she was obviously shaken up, but she managed to tell me that she just got off the phone with the travel agent and that she and my mother would be arriving in Munich within 24 hours and that I should do everything possible to ensure that they don’t cut into me before they get there. I have the best family in the world!!

Shortly thereafter the night nurse came in with my meds (another sedative!!) and took my blood pressure, at which point my favorite girl gave me a good-night kiss, wished me sweet dreams, and excused herself from the hospital. The nurses there were SO COOL for not even mentioning that visiting hours had ended over 5 hours ago…

In case you have been skimming this page until the end, let me please re-iterate the key points:

  • I have such awesome colleagues!
  • I have totally amazing friends!
  • I have the best family in the world!

the rest of the story continues as individual blog posts in (reverse) chronological order.

(follow this link and scroll to the bottom, reading upwards…)
the story in reverse chronological order. Keeping in mind that this is (still) a work in progress and I am working on filling in all the holes and things I want not to forget, as I remember them and as I have time to beat on my keyboard.

|K< Jan 9, 2k10

  1. Thank you for your sharing this chapter in your life with us. I’m reading every entry and more than appreciate your strength, honesty, and wit. You make me giggle. And again, you are supported from across the globe by more people than you know. Keep being a superhero. 🙂

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