I remember when …

It’s funny how certain memories will rise up and smack you in the face, a little reminder of days gone by sent as a wakeup call or to see where you where and how far you travelled.

One thing I promised myself when I moved to Calgary was, I’d take part in research projects and volunteer at the hospital, my home away from home. The research part I have down pat, but the volunteering took a bit longer to happen, thanks to covid.

Over a year later than planned, I began my weekly shifts on the 11th floor, unit 111 to be exact. I’d spent time there after each surgery and during the multiple visits to the seizure unit.

Because my epilepsy is so complex, exists so far outside the typical framework of most, the need to share my experiences and limited knowledge gained is huge. It is this need which fuels my desire to share my story, was the muse for my poetry and ultimately the purpose behind writing my memoir, Battles of The Mind [not yet published, of course] and for this blog.

So much has occurred since my epilepsy diagnosis back in May 2015. Countless tests, doctors’ appointments, ambulance rides and hospital stays have happened over the last 6 years. I don’t recall all of them clearly, most are a foggy recollection of blurred images fragmented and poorly pieced together. After so many trips to the emergency room, visits with specialists, labs, and scans, my only records are calendar entries, discharge papers, and notes.

But I’ll never forget my first visit to the SMU back in February 2016. I recall breaking down at the Calgary airport while waiting for luggage, watching the Superbowl in the hotel’s lounge, and the loneliness after my brother-in-law left after ensuring I arrived safely. The overwhelming panic and confusion of when to go, fearing the worst and scared beyond scared. This once independent woman was reduced into a cowering clingy mass of defenceless goo, unable to do naught but the basics.

I don’t know which nurse greeted me, what doctor was on rounds that first day I entered into my 9×9 cell. It was smaller than any bedroom I’d ever had. Contained the standard hospital bed, call button, oxygen and other paraphernalia protruding from behind the head board. A couple of shelves mounted in an alcove, A cupboard and drawers, tv mounted up high in the corner out of the way. Half of a wall housed a monitor, keyboard with tray, and a compact CPU. And a chair in the corner. I barely had 2 feet of clearance on either side of the bed and a fraction more between the foot and the door. To add to the congestion was a night stand and an adjustable table tray. Not a lot of space but then this wasn’t a luxury hotel on some sun drenched beach. I was here to work, or my brain was at least.

I can still smell the glue used to fasten the 20 or so electrodes to my head. A combination of model glue and turpentine that fills the nostrils almost choking you. Fortunately, it didn’t last for long and regular breathing was restored in no time at all. Gauze-like bandaging like that of a tensor bandage, wrapped my head, to help keep the dime-sized electrodes in place. A cascade of wires resembling a colourful braid, hung down my back, over the shoulder disappearing into a Walkman type cassette held in a pouch. A flat telephone line wire connected the little box to the computer on the wall acting as an external hard drive collecting seizure activity as it occurs.

The sliding doors of each ‘cell’ were made of metal and glass. I felt like an animal on exhibit at the zoo, hiding inside my makeshift home venturing out for tests and bathroom trips while attached to a leash.

It’s important to stay on camera, to capture the seizures on both the EEG and video. The combination of brain waves on screens and the movements on tape, go a long way in aiding the doctors in their diagnoses.

That first stay was eleven days. Eleven days of solitary confinement, isolation, loneliness, and fear. I will never forget that time, even after four more trips. It’s a frightening experience. To have epilepsy was bad enough, all the tests and pills a necessary evil, but it’s those days stuck inside a ‘cell’ restrictions limited, visitors sparse, if at all, that becomes a challenge.

Just like anything else, if you haven’t had it, experienced it, or tasted it, you couldn’t ever begin to understand it. My heart aches for all those patients that lay attached to that leash during covid. Although I’ve been there done that multiple times, I couldn’t relate to their experiences of today, restricted further by a deadly virus keeping loved ones away.

Undergoing seizure monitoring is just one of the hurdles that an epilepsy patient will face, in my experience. Of course, there are others. The medications themselves, their side effects, and the toll they take on the body and mind. Multiple MRIs, CT scans, SPECT and PET scans, EEGs [outside of a monitoring unit], blood work, injections of dyes and rescue medication. Lumbar punctures, ultrasounds, halter monitors, oxygen and intubation tubes and IVs, anesthetics, and pain killers such as Percocet and Tylenol 3s. It’s an ongoing list of recurring tests, procedures, doctors, hospitals, labs, and ambulances. A life sentence as guinea pig, test subject, lab rat and a pin cushion.

My heart goes out to all those lying in those 9×9 or 10×10 cells sentenced to solitary confinement awaiting their verdict.

Take comfort in knowing there are others out there, like you, sending positive vibes your way.

Hugs to each and everyone of you,

*And as always, these are my thoughts, opinions, and insights based on my own experience. *

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