Not one of those* patients

Tears stream silently down my cheeks as I try to shut my eyes even tighter against the light. I try to pull my head away, but is prevented by the headrest and various straps, chords and electrodes. “Keep your head still” I am ordered. I obey, because I don’t want to be one of those patients. It feels as if shards of glass are ground into my brain through my eyes. It feels as if my brain is inhabited by multiple fire ants. I feel sea sick.

I try thinking of previous holidays and happy times. I try to remember the absolute stillness of falling snow in an alpine forest. In my mind I sing over and over again:

“Daar’s ‘n plek wat ek van weet

sonder sorge, sonder pyn, sonder leed

die pad daarheen is ongekaart

die reis daarheen is sonder vaart

en daar’s rusplek langs die pad.”**

And finally it is over. The electrodes are removed and I am free to leave. I am disorientated, nauseous, confused, and have a headache. Jean, my partner, wipes the tears from my face with his handkerchief. I am free to leave, but feel so poorly that I can hardly get up from the chair. Never mind walking down numerous corridors and different buildings to go for the scheduled MRI.

Something bad is going to happen, I can feel it. But as yet, I don’t know what it is.

Before the MRI, I change into a hospital gown. I get asked if I am okay numerous times, but I don’t know if I am. I don’t feel okay, and if the radiographer and the nurse keep on asking whether I am, I probably don’t look okay either.

I don’t want to complain or be difficult. I don’t want to be one of those patients. So I just nod and whisper “Yes, I’m okay”.

I ask Jean to make sure that they watch me carefully whilst in the tunnel. I can feel something is going to happen. I go to to the loo twice. I don’t want to embarrass myself like the first time.***

And then it happens.

A phone rings. It’s the last straw that breaks the camel’s back. A storm breaks loose in my brain. I can hear Jean asking if I’m okay, but as much as I want to, I can’t respond. I see myself twitching and jerking. I try to stop it, but I’m powerless to do so. I can’t breathe. I hear horrific grunting noises. Is that me?

And then… nothing.

After a while I become aware of my knees feeling cold. Then I realise that I’m lying on the tiled floor. I hear people speak, but I’m confused and can’t answer. I obey when told to get onto a stretcher.

And then it happens again. I feel and see my right arm twitching. I might have said something like “Here it goes again” but I don’t know.

Movement, lights, people speaking without making sense.

Next thing I know, I’m in ICU surrounded by nurses and doctors. Blood tests, drips, vitals. Machines with beeping alarms. All familiar to me, but not from this angle. And Jean’s reassuring presence by my side; holding my hand and speaking softly to me throughout. I drift in and out of awareness.

A friendly nurse brings me a bedpan. She is kind and brings me a wet cloth to wash as well and helps me into a dry gown. ICU is not a place for modesty. Initially I try to cover up, but it’s hot and too much of a bother and I’m not feeling well enough to care anyway.

When I am finally fully awake and aware of my environment, I listen to the different sounds of the various monitors and try to guess the diagnoses of my fellow ICU inmates from the snatches of conversation I overhear. One of them is restless after having surgery. “NO. DON’T PULL ON THAT. LIE STILL. STOP THAT OR ELSE I’M GOING TO TIE YOUR HANDS. DON’T BE DIFFICULT NOW” My first instinctive thought is to get up and help. After all, that’s what I’m trained to do. Maybe he is in pain? Maybe his ET tube is blocked and he can’t breathe? But then I remember I’m not on call. I am now on the other side.

I don’t want to be one of those patients, but in the early morning hours I press the call bell. I can feel it coming again. It’s short lived this time and I don’t lose consciousness. It still feels horrible though. The nurse stands by my side watching while, yet again, I sing to myself:

“Daar’s ‘n plek wat ek van weet

sonder sorge, sonder pyn, sonder leed…”

Before ward round the next morning I am briefly seen by the anaesthetic registrar rotating through ICU. She’s friendly, but distant. And in an obvious hurry to get to the patient next to me who has apparently bled profusely during the night. (Where were the nurses and the on-call doctor when he bled? Is it maybe the same patient who was “difficult” and had his hands tied to the bed?).

When I later look at the doctor’s notes in my folder, the friendly anaesthetic registrar has written down a full history and examination despite never touching me by hand or stethoscope or even asking me how I feel. I consider telling her that maybe she should have looked at my medical history and asked me a few questions before writing her fraudulent notes. Maybe examined me before writing “all systems NAD?”

But I don’t want to be one of those patients.

After another day of observation and no further seizures, I am transferred to the ward and eventually discharged. I get told that I was in status epilepticus for almost 2 hours. That I have epilepsy due to a venous infarction caused by the sagittal sinus thrombosis that started all of my symptoms a few months ago. I recognise the terminology, but I am still shocked and confused. I have many questions, but don’t ask any.

After all, the doctor is in a hurry and I don’t want to be one of those patients.